Thursday, March 26, 2009

Challenging Beliefs

I am a supporter of the concept of Neurodiversity as I understand it. After a few years of striving to improve my working knowledge and understanding of autism, I think I have a pretty good grip on this concept. I can assure you that my understanding of Neurodiversity varies significantly from the ideological strawmen extended by ND's detractors. Perhaps the most common such strawman is the one that roughly states "The Neurodiversity crowd will have you believe that autism is simply 'beautiful' and that we should do nothing to mitigate any challenges for autistics since it is, in their view, just part of their personality or something". This, of course, is patently wrong.

I am a supporter of the concept of Neurodiversity and I fully acknowledge the challenges and negative aspects that can and, in many cases, do plague autistic people. In a radio broadcast to 10's of thousands of Southern Californians, I was asked about this and answered the same way I am answering here. In presentations to audiences at the University of San Diego Autism Institute, I have made the same statements.

Where am I going with this? Well, I read an essay today. A really powerful, deeply disturbing essay. And after I read it, I couldn't help but think to myself how quickly the knives would be drawn by the ND detractors out there after reading it.

The Monster Inside My Son
Above is a link to the essay, penned by Patricia Ann Bauer for In it, Ms. Bauer bares her soul and describes a shift from the type of mentality I currently espouse and write about and talk about (in her own words: "For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.") If you are autistic, or if you love someone who is, brace yourself before reading this. But please do read it.

You see, it is fairly easy to predict the outcry once this essay makes the rounds. From the 'vaccines cause autism' crowd over at, for example, Age of Autism, there will be a cry of "Hurry up and cure your kids now before they become raving lunatics! Just click on our sponsors tab and order enough vitamin supplements and natural chelators to save your family!" Don't believe me? They've already done this, just last week.

From the 'autism is horrible and don't dare try to tell me otherwise' camp, you might see a reaction that tries to paint Ms. Bauer's experience as the inevitable endgame for "shiny happy people" parents like me who simply refuse to give in to the rhetoric revolving around how devastating autism inevitably is. You might see a call for us to pull our head out of the sand and acknowledge that our lives really have been demolished by having autistic kids. You will of course see the tired, old accusation that we are neglectful in not treating our kids! All of this is incongruous when oriented towards people like me and just about every parent-advocate I know who identify with the neurodiversity concept, all of whom carefully guide their children through various forms of available therapies, supports, and services in an effort to provide the best possible outcome for their kids.

Guess what? Nothing always works. This is a powerful, overriding message that I get from Ms. Bauer's essay. Was her son provided adequate supports, services, love and affection? I think it is a pretty sure guess that yes, he did, judgng by Ms. Bauer's long standing record as an admired and knowledgeable disability advocate and her very clearly expressed affection for her son. In her own words, "It happened no matter how fiercely I loved him or how many therapies I employed."
It is chilling to me to read the following, "Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ ... We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level ... I occasionally even referred to him as 'cured'." Chilling because this could be one of my sons. We have used the sam terminology at times for both boys, saying to ourselves on some days, "Gosh, its almost like he's 100% typical".
Then there are the days that one comes home with clothes destroyed from cutting them, or chewing them. Little outburts of anger that, when asked about, are simply answered in a low, monotone voice "Why do you ask me about that I don't want to answer that." Or my youngest, who we jokingly referred to as "The World's Angriest Baby" prior to our understanding of how his neurological development was affectng the way he dealt with us and his surroundings. He is a little force of nature, to be sure.

So there you have it. A "neurodiverse" dad, expounding on the difficulties that autism can entail, the fears that we have as the future seems less far away than it used to. And all this in response to a poised, respected autism advocate who has been rocked and brought to her knees in the last few weeks and months by the tragic changes experienced by her son.

I am not attempting to advance the concept that autistics are more likely to become violent, not am I trying to create fear that this type of outcome is inevitable in some individuals. I am simply stating that gut-wrenching descriptions of problems such as the one on the linked essay have a powerful and essential role in helping to form my view of the many potential challenges that lie ahead for my own sons and all autistic people out there.


Niksmom said...

I read that article this morning and sat with my feelings all day. I think there's a blog post brewing...

The flip side of the coin is that no one can ever predict for good or ill which way any person will turn out.

MJ said...

I don't think you are the typical ND parent. From what I have read of what you have written you have more of a down to earth reality based approach.

Most of the ND people out there do not share your sense of balance.

Not when you have people out there like Michelle Dawson actively discouraging parents from trying ABA with their children.

Not when you have people like the (hopefully retired) autism diva out there mocking biomedical treatments.

Not when you have the mindless "acceptance" cheerleaders out there putting forth an image of autism as just a harmless "difference" while at the same time denying that incidents like the one with Patricia Ann Bauer's son can happen or have anything to do with autism.

Michelle Dawson said...

In response to MJ, in my view, accurate information (what MJ is objecting to) is always good for autistics.

In response to Steve D., I suggest looking up the many other articles Ann Bauer has written about her son Andrew, and what he has lived through.

Steve D said...

@MJ -
I don't think there is such a thing as a typical ND parent.
But I'd like to point out that you are perpetuating in your comment one of the same strawmen I mentioned in my post - that acceptance equates to a denial of negative aspects.
Further, though I do not openly mock biomedical treatments, that is far more a matter of style than of belief. I am adamantly opposed to the rampant alt-med predation upon the autistic population, and I see very little of value come from the altie-type biomed practitioners.

Steve D said...

Michelle -
I will try to do so. Time is an issue for me - can you direct me to any relevant articles that you have in mind, or perhaps offer a brief recap?

Michelle Dawson said...

In response to Steve D (time is an issue for a lot of people), see this and this for starters. Ms Bauer's webpage is here, there's a list of therapies her son received when younger.

Jen said...

Steve- Thanks for writing about this. I'm another "neurodiversity" mom, and this article is my biggest nightmare as my 13 year old son is already going down the same route as Andrew. My son has lived in a group home for almost 6 years now because he needs more than one person to keep himself and others (mainly his two autistic sisters) safe.

I don't believe that autism and violence go hand in hand, fortunately. I would not want anyone to have to go through what my son does every day.

I am glad that Ms. Bauer wrote the essay (even though it was so painful to read), as I have found over the years that "the autism community" can be less than supportive to those of us who have "failed" our children by having to turn outside the home to get them enough care to keep them safe. I hope that this at least provokes enough discussion that people can see that sometimes there are no easy or correct answers, even when you as a parent do everything "right" in terms of interventions, therapies etc. I have always found it telling that out of the entire autism community, Casdok is the only person who writes consistently about what it's like to have a child in care, for her and for her son. Hopefully this essay by Ms. Bauer may spark some new interest in support or at least discussion not only for the people who are in care, but for their families as well.

Fleecy said...

I read the article. It was scary and very sad. I wish I had something else to say about it but I don't.

Navi said...

I think it is sad the number of people don't read what you or I read out of it. They feel that she's saying autism equates violence, when she specifically does not say that. She also says, in the end, that it's possible it's the world he lives in that caused him to become like this. I'd strongly recommend anyone reading it read the entire article.

And thank you, Michelle, for the links. Even though she doubts herself for blaming the meds in the article linked to, reading those I'm inclined to think perhaps they might have been the problem... The medical community will admit that illegal drugs can have dangerous, permanent consequences. I'm inclined to think it's entirely possible for legal ones to do the same. My son started hitting after taking adderall, even though we only gave it to him for a few weeks, if even that, he's still hitting

MJ said...

Steve - I do not think that acceptance = denial is a strawman argument. I have run into this attitude on many occasions so I think that it is very real and very common, so we are going to have to disagree on this point.

About the biomed, I know that you do not openly mock biomed (although I have wonder about your use of the word "open" in that sentence) - hence why I made the distinction between what I have seen you do what what I have seen others do.

But I don't think that you can debate the fact that a significant part of the ND movement does mock biomed. And that is a problem since it can help some children.

As for value from alt-med, like any medical subject it all comes down to how good the person you are dealing with is. You find someone good and they can be a huge help - if you find the wrong person then you can have problems. I think that the segment of alt-med community who prey on autism is smaller than you think, they just make more noise.

MJ said...

Michelle Dawson - you said:

"In response to MJ, in my view, accurate information (what MJ is objecting to) is always good for autistics."

First, I am not objecting to "accurate" information. I am objecting to you actively discouraging parents from trying ABA.

Accurate information would include a balanced account of the fact that for a decent number of children with autism ABA is very beneficial and a very powerful teaching tool.

Second, your intention may be what is good for people with autism but the results of your actions is to cause harm to those you are trying to help.

Michelle Dawson said...

In response to MJ, in my view, "accurate information" means information which can be verified through primary sources, including those in the major area of quality of intervention/treatment research in nonautism, non-ABA areas.

This accurate information (what MJ is objecting to) about the science and ethics of ABA-based autism interventions (or any other kind of intervention), can influence the decisions parents make.

I disagree with MJ that this is a bad thing that harms autistic children. I also disagree with MJ that parents who choose to seek accurate information (e.g., from primary sources, which I provide) are harming their autistic children.

And I generally disagree with MJ that providing all sources necessary so what I write can be verified, and welcoming factual criticism, and other basic scientific standards, are harmful to autistics or our parents.

Like many autism advocates, MJ is claiming that I am harming children without providing any evidence or sources for this. Possibly, this represents the standards that MJ is promoting for autistics. In my view, autistics deserve better.

Steve D said...

Thanks for commenting Jen, Fleecy, Navi.

MJ -
Thanks for your comments as well.
By 'openly mock', what I mean is that I don't make that a primary focus of this blog nor do I spend as much time as I used to debating the issue in other areas. It really is a matter of style, in that I am a fairly non-confrontational person.

Having said that, I have spent considerable time and effort adjudging various specific "biomed" treatments. With the sole exception of the very recent and flawed hyperbaric study, I can't immediately think of a single altie or biomed treatment that has been validated beyond the anecdotes. Further, many of them have been so roundly and utterly debunked that their prior acceptance provides a stark example of why our individual ability to determine what 'works' is so deeply flawed.
And this leads to my understanding and belief that there is a very large and thriving and profitable industry that, despite any good intentions they may possess, relies completely on this deep bias that seems to validate their products' and services' efficacy.

So no, I not only don't deny that several "ND" folks mock biomedical quackery, but I support their efforts and chime in with my own findings and assertions from time to time, albeit with a bit less snarky tone than some.

Please don't mistake my soft sell for any type of tacit approval for those who make their money on the backs of our community.

You went on to say:
"As for value from alt-med, like any medical subject it all comes down to how good the person you are dealing with is. You find someone good and they can be a huge help - if you find the wrong person then you can have problems."
I disagree. Truly valuable treatments from alt-med are no longer alt-med - they become mainstream. Alt-med, almost by definition, consists of treatments that either didn't make the cut in actual trials (think Secretin), are so 'vanilla' that their importance falls off the radar but can be added easily to any practitioner's repertoire (think fish oil), are so whacky they can't even pass the common sense smell-test (think RNA drops or transdermal chelators), just don't seem to do anything when actually studied (think GFCF), or are the perennial stand-by favorites to solve/cure all diseases/problems that are "incurable" by Pharma (think chelation).
So I think what you are (perhaps unwittingly) relating here is that alt-med is a self-fulfilling prophecy. If it "works", then you found a good provider. If it doesn't, that provider must be one of the bad ones.

MJ said...

"Possibly, this represents the standards that MJ is promoting for autistics. In my view, autistics deserve better."

Nice sell line, practice that a lot?

The point that you are missing or more likely ignoring is that most parents are not equipped to deal with the research behind ABA nor is dealing with "primary sources" the typical way for medical treatment options to be made.

The end result is that you confuse people with scientific sounding jargon and fail to condense the material to an appropriate level.

And the end result is that you discourage parents from listening to medical professionals who are better able to evaluate the specifics of a child's case and provide appropriate guidance as to the approach that will work for the child.

The proper field for your criticisms of ABA is in the medical community where they can be judged and accepted/rejected by people who understand all of the nuisances.

As for specific evidence, I have written about it before so go read it if you care to.

MJ said...

Steve - I think we are working from a different definition of what biomed is about and how it is conducted.

I don't think this is the time or place for an extended discussion about the point but let me just say that there is a biomed group out there that does rely on evidence and does not seek to prey on parents. Hence the comment between a good doctor and a bad one.

As for HBOT you have several prominent ND sites (LBRB) making absurd comments about the study in the name of analyzing it.

This sort of thing is part of the problem with ND - you are so committed to your own theories that you mock and deny anything that does not fit into them.

farmwifetwo said...

What has happened to her son is one of my biggest nightmares.

I am one that can tell you that for some biomed works. And it was only casien and only my "mild" son. The severe one... nada... so.. no, it's not a CURE, nor is it for all. But it did stopped the tripping (and not putting his hands out to break the fall - have you seen the mess it makes when you fall face first??), daily nightmares/terrors, horrible daily diahhrea and diaper rashes that would make him and I cry. It did slow down the meltdowns and headslamming - didn't get rid of it, but it slowed.

So again, not for all and IMO not worth trying unless there are extenuating dietary reason's to do so.

I also am in the "against" crowd for IBI/ABA in the "sit for hours at a table and be trained like Pavlov's dog" ones. It was a nighmare for our youngest son.

NOW, what Michelle and her group doesn't want to tell you is that ABA also includes excellent tools like "token programs" for children to learn how to navigate the social rules of the classroom. My eldest son went from having behavioural issues in Gr 3, to coping and activily participating in Gr 4... all b/c now he understands what is expected of him.

I do find the Dawson's/Diva's/LBRB/Joy of Autism's frightening b/c they do not advocate independance, education, or social services for those with autism. Instead they advocate that autistics should "evolve", shouldn't have to talk, join mainstream society and we'll just fight to ban the word retard instead of demanding services for adults and children. Estee even says she has no plans on any other interventions, or homeschool of her son, nor does she think he should learn to speak so he can be understood and have his needs met easier by those around him. Society owes him, since when??

They like to brush these kinds of articles away when there are classrooms for of segregated and dangerous children in the public school system sitting in PDD classes that are suspended weekly for days. But we don't talk about these families... they aren't the "norm"..

I have noticed the ND crowd doesn't like autistics like Dr Temple Grandin b/c she advocates that they get out, get a job, and mind their behaviour and their manners.

So, IMO, just like the anti-vaxers, the curebies, the this camp, the that camp... the ND crowd IMO is just as dangerous as any one of them.

Which is why we're making our own trail.... But I do fall into the "I hope the Aspies and the NLD's get removed from the spectrum in 2010" crowd. Which will included my eldest w/ NLD... IMO they have nothing in common with those with autism and PDD and should not "represent" them.


Michelle Dawson said...

According to MJ, accurate reporting from primary sources in the ABA literature (and possibly, from the entire autism literature) is bad for autistics. Given MJ's view that my work is harmful to children, MJ's position is also that taking the risk of testing your ideas through peer review is bad for autistics. I strongly disagree.

MJ's position is that no one should blog (or write in any way that is publicly available) about the scientific literature in autism, if this involves accurate reporting from primary sources, including full references. Why? Because in MJ's view, parents of autistic children are not intelligent enough to deal with accurate information verifiable via primary sources. I strongly disagree.

Again, MJ doesn't provide even one source to support MJ's claims, including MJ's very serious claim that I am harming children. For example, MJ is claiming that I've told parents not to take their autistic children to medical professionals, which of course includes my colleagues at a large university-based autism clinic. My colleagues would be very interested to know where I told parents not to have their autistic children evaluated within clinics attached to major university-based research groups, which is apparently what MJ is claiming.

If ever MJ provides sources and evidence (links, references, etc.) for MJ's many claims, I'll do my best to respond if I see any factual criticism. Sadly, so far, MJ has offered none. The comments on my blog (a more logical place to discuss my work than in the comments on Steve D's blog) and website have long been open, and it's easy to find my email address.

All with apologies to Steve D for being off-topic... I'm not going to respond to farmwifetwo, but she does show what you can write about others (anything) when you don't bother with sources, evidence, and so on.

MJ said...

"According to MJ, accurate reporting from primary sources in the ABA literature (and possibly, from the entire autism literature) is bad for autistics"

Wow, I said that?

"Because in MJ's view, parents of autistic children are not intelligent enough to deal with accurate information verifiable via primary sources."

And I said that too?

"MJ's position is that no one should blog (or write in any way that is publicly available) about the scientific literature in autism, if this involves accurate reporting from primary sources, including full references"

And that is my position? Really?

Talk about setting up the strawmen and knocking them down. You had to have ordered some extra bales of hay for all that.

Michelle Dawson said...

MJ wrote, "Wow, I said that?" MJ expressed that view. See above.

MJ wrote, "And I said that too?" MJ took that position. See above.

MJ wrote, "And that is my position? Really?"

In order to verify MJ's position, I suggest reading what MJ has written here in the comments. That's what I did.

If MJ has changed his/her mind, s/he is free to say so. But in the meantime, I'm stuck with what MJ has actually written, which is above.

MJ said...

"In order to verify MJ's position, I suggest reading what MJ has written here in the comments. That's what I did"

I would agree, read what I actually wrote and not the distorted view put forth by others.

Michelle Dawson said...

Anyone can read my very public, very available work, in which I've taken the risk of testing my ideas via peer review, and I've reported accurately from primary sources (which I provide, so anyone can verify what I write), while encouraging anyone who finds factual errors in my work to point this out (see links here, for example).

MJ claims that this harms children (see above), including because parents of autistic children can't be trusted with accurate information from primary sources (in fact MJ's comments here are a good place to refer parents who wish to understand how autism advocacy works). MJ has also made more specific unsourced and unfounded claims that I harm children. I responded to these claims here.

MJ said...

"in fact MJ's comments here are a good place to refer parents who wish to understand how autism advocacy works"

I think I have to agree with that statement as well, you have provided a very good example of "advocacy" although not in the manner you mean.

You did a very good job of setting up both sides of the discussion and attributing false statements to me while completely ignoring the substance of what I said.

For example I said "not equipped to deal with" yet you attribute me with saying "not intelligent enough". These concepts are clearly very different - one means unprepared while the other means, well, lack of intelligence.

So I am left with you simply miss the meaning of what I am saying or are purposely misconstruing my statements.

Regardless of the cause it makes any sort of discussion pointless (although you do carry on a good monologue).

So as you said, you have provided a very good example of your form of "advocacy" in action. It was very enlightening, and for that I thank you.

Steve D - I apologize for continuing this off-topic discussion in your comment forum for so long.

Michelle Dawson said...

In response to MJ, mostly I'm not an "advocate." Possibly this would count as advocacy; apparently MJ opposes this "form of advocacy."

But mostly I'm a researcher, which means that like all researchers, I take the risk of testing my ideas through publication in peer-reviewed journals. MJ claims this harms children. Also, like many other researchers who blog, I blog about research. And MJ claims this harms children. These very serious unsourced and unfounded claims are the substance of what MJ wrote (see above), to which I responded here for example.

And thanks to MJ for reiterating MJ's autism advocacy view that parents of autistic children can't be trusted (they are incapable of understanding what they read; they are too irresponsible or immature to prepare themselves; etc.) with accurate, verifiable information from primary sources. This too is the substance of what MJ wrote, and what I have responded to.

Way up there somewhere I suggested to MJ that a more logical place to discuss my work would be on my blog or website (which, for more than 5 years, has provided unmoderated comment boards, which are very easy to post on), rather than in the comments on Steve D's blog.

jypsy said...

"For example I said "not equipped to deal with" yet you attribute me with saying "not intelligent enough". These concepts are clearly very different - one means unprepared while the other means, well, lack of intelligence."

In what way are "most parents" "not equipped to deal with the research behind ABA"?
"Unprepared" doesn't make your meaning any clearer than "not equipped".

Janet Ha said...

Thank you for posting the link. I have read her other articles in the past, and this one was heart wrenching. The comments are interesting too, everything you speculated and more. I work in special ed, with high school students who have autism and have never met anyone like Patricia's son. (That includes the graduates too, at least into their 20's) There is a spectrum, just as some NT kids are violent or mentally ill too. Not everyone. Not many. But the few who are create a world of pain for those who love them and feel responsible for them. Best of luck to you and your family.