Saturday, September 26, 2009

"I Am Autism"

Autism Speaks's latest video, "I Am Autism", is the single most offensive thing I've ever seen.

I'm not going to get into the issue of Autism Speaks's history of excluding autistic people, its repeated patronization of us, its... well, you get the idea. I'm just going to confine myself to the video.

I will, however, comment that I think this despite the fact that I grew up in the South Florida Jewish community and have read Mein Kampf in its entirety. I am also quite familiar with the Protocols of the Elders of Zion and have seen a translated brochure for Stalin World. During high school, I made something of a study of Soviet propaganda. Keep this in mind when I say that "I Am Autism" is the most offensive thing I've ever seen. It's that bad.

As I've tried to explain before, you cannot separate autism from autistic individuals. Anything said about autism is said about autistic people. Anything said about autism on a demographic level is said about the existence of us as a group; anything said about autism in a child is said about that child.

The following is, other than some changes in number (I changed a few uses of "I" to "we" for gramatical reasons) identical in meaning to the video. Hopefully, it will make just why the autistic community is so outraged a bit more apparent to anyone reading it:

(In sinister tones)

I am the existence of autistic people.

I am visible among your children, but I am invisible to you until it is too late.

I know where you live -- and guess what? I live there, too.

I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.

I work very quickly. The existence of autistic people works faster than pediatric AIDS, cancer, and diabetes combined.

And, if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don't sleep, so I'll make sure you don't, either.

Having an autistic child will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarassment, without pain.

You have no cure for me. Your scientists don't have the resources, and autistic people relish their desperation.

Your neighbors are happier to pretend that I don't exist. Of course, until it's their child who's autistic.

We are autistic people. We have no interest in right or wrong. We derive great pleasure out of your loneliness; we will fight to take away your hope. We will plot to rob you of your children and your dreams. We will make sure that every day you wake up, you will cry, wondering "Who will take care of my child after I die?"

And the truth is, we are still winning and you are scared, and you should be.

I am the existence of autistic people. You ignored me. That was a mistake.

And that's the first half. To try and translate the second, I'd need to change the semantics a bit more. Suffice it to say that it's a determined statement that people are getting together to rip their actual child out of the "shell" that we are.

In other words, it's based on the implicit philosophy that we're not real people and that they need to make us into real people.


Edit: Katie Miller did a brilliant parody of the video here. I'm still laughing.

Friday, September 25, 2009

Another Recent E-mail

On a note related to my previous entry, the following is the full (minus the addressing line) of a previous e-mail in the same conversation as the last one.

Thank you for your support.

It's worth noting that one of my introductory posts mentioned both that I've recently completed the postgraduate coursework for BCBA certification and that I perseverate on research... in addition to the fact that I am seeking additional (supervised) clinical experience.

The first and last of these should have indicated pretty firmly that I do not believe that seeking help for your children is inappropriate, as some of those on the list seem to think I do. If this were the case, I would neither have taken the time to gain credentials related to providing this help nor sought a job that involved providing it.

The first two, on the other hand... I am uncertain as to how to phrase this politely, but...

There are over 1,500 people on this list. Many, if not most, of them are parents of autistic children. Of that number, only one person has thought to write me off-list regarding anything I've said on it (excluding my statement that I was seeking work -- if that is included, the number increases to two). No one has thought to ask me about research studies (which I read for fun and have extensive knowledge of). No one has even thought to ask me to reccommend articles, studies, or references -- on list or off. This is despite the fact that autistic individuals almost inevitably acquire a tremendous amount of detailed knowledge of the subjects of their perseveration. Many, if not all, of you have extensive experience with this phenomenon.

What's more, we almost always enjoy talking about the subjects of our perseverations. Again, many, if not all, of you have extensive experience with this phenomenon. I assure you that I am no exception on this count... and would go so far as to say that I'm near-starving for intelligent discussion of the research (in large part since I can't afford to go to conferences all that often). I only know one other
individual on the spectrum who actively perseverates on research and is at anything approaching my educational level (in fact, I consider her to be considerably above it despite the fact that she has less formal education than me). I always look forward to and enjoy our interactions -- despite the fact that they seem to almost inevitably break down into a series of misunderstandings -- because I always learn a tremendous amount from them.

Additionally, the nature and frequency of my responses should have been a pretty substantial indicator of my willingness to respond to that sort of thing. I have even made explicit offers to provide information or to elaborate on points. I cannot recall anyone taking me up on any of these offers.

I'm aware that there are other factors potentially involved (a desire not to impose on me, for instance), but... over 1,500 people. Even if half of that number was composed of service providers, that would still be 750 parents.

So, for the part that I'm not really sure how to phrase politely -- just what sort of impression do you think I get from these facts?

In addition, every post I've made has included a link to my blog. Many of the posts there are aimed at helping parents at some form or another. Many of them talk about things that I've mentioned only briefly on this list.

I have not, to date, recieved a single comment on any of them from anyone who arrived there by following this link. I also have the ability to make this statement.

Actually, I'd go so far as to say that I haven't recieved any indication that anyone here has even followed that link except for the one person who thought to write me off-list regarding something I'd said on it... who mentioned having done so in a private e-mail.

What sort of impression do you think that makes?

I'm bringing this up because, apparently, many on this list have accused me of not attempting to (or being unable to) take another's point of view or to empathize with another's positions. In fact, this is one of many largely unfounded autism stereotypes... and, if it is true in this case, it most certainly is not unique to my side of things. The above example was, frankly, the gentlest and least potentially controversial way I could think of to point that out. There are many, far harsher and more critical, ways I could have chosen.

This way also had the advantage of pointing out a resource that some of you may have missed.

A Recent E-mail

The following is from a recent e-mail sent in response to an accusation that I lacked empathy after my attempts to explain that anti-autism hate speech is offensive to several curebie parents. I've modified it somewhat (taking out an introductory dependant clause in the first paragraph and removing a parenthetical reference to another list-member) to better fit the format of this blog and to respect the privacy of the individuals involved, respectively.

It's not so much that I'm oblivious to the idea that my words may cause pain as that I view that pain as unavoidable. "Autism" is a description of a set of neurological and psychological differences -- differences in the way our brains work when compared to yours. Setting aside the question of whether or not those differences are deficit-driven and/or pathological, how exactly do you think it makes us feel when our parents say that they hate the way we think and view the world? That is what autism is.

"Love the child, hate the autism" is impossible. You cannot separate the way someone's brain works -- the way they think, the way the feel, the way they remember things, the way they view the world, all of which are described by the reification we call autism -- from who they are.

What's more, children grow up... and an autistic twenty-five-year-old is a very, very different creature from an autistic five-year-old. When your children grow up and view these conversations, how do you think they'll feel, given what I described above? Leaving aside the question of whether or not vaccines "cause autism", how do you think that your children will feel when they see you advising people to risk their child dying rather than growing up to be like them? Is that not saying that a life like theirs is worse than death? How do you think any child would feel, growing up to read their mother's public and published accounts of how raising them was a "nightmare"? We've lived through that.

This, not merely the quackery (although that is awful), is the worst aspect of the whole DAN-and-Generation Rescue phenomenon... and I sincerely doubt that anyone on this list wants their child to go through this sort of pain.

I am painfully aware of what this sort of thing does to a person. I have had the unfortunate experience of seeing people go through this. It is not pleasant. This is a major understatement.

So -- when given the choice of trying to prevent this, and causing pain to parents as they mourn the loss of a "normal" child who was never born, or staying quiet and watching as countless children grow up to experience the same unspeakable heartache that countless friends of ours have lived through... what would you do? When confronted with the memory of someone's tear-filled face as they ask why their (loving, but misguided) parents hate them, what would you do?

(For the record, the last question above is the result of my attempt to translate some of my own experiences into neurotypical terms. Distraught expressions play a role in neurotypical cognition that they do not in most autistics' emotional processes. I've never physically been there when asked that question... but that doesn't matter to me; the emotions would have been exactly the same.)

Sunday, September 13, 2009

On Science Fiction and Identity, Part One

What is it that makes us who we are?

Really -- it's an important question. Philosophers have been debating this for milennia... in large part because they've realized just how inportant it is. It's not a simple question. It's not an easy question. It's not a question that we have a definitive answer for.

Tackling this question involves grappling with the deepest aspects of philosophy, to struggle with the essence of humanity, and to seek answers that may not even exist.

It's also not a question that science can answer. Sure, science can inform the debate -- I've long since lost count of the number of studies I've seen on issues related to this -- but it's fundamentally a philosophical question, not a scientific one.

Today we have three major groups exploring this issue, all from different angles and all producing different sorts of results. The first two -- philosophers and scientists -- are pretty obvious. The third category -- science fiction authors (some fantasy authors do this, too, but let's not get too deep into the issue of the blur between the genres) -- are a pretty uniquely modern phenomenon, but have been quietly (or, occasionally, not so quietly) exploring a number of complex philosophical issues in the background of our culture for quite a while now. Many of these explorations have to do with issues of identity and humanity.

They've even been doing it in a manner that's a lot more accessable to the "average joe" than most philosophical treatises.

I'm not saying that a Star Trek episode is as important in the grand scheme of things as a major philosophical treatise, mind. I'm just saying that they often explore the same issues, albeit from different angles.

It's rather akin to how the ancient Greek morality plays explored the philosophy of ethics, really.
I'm also not saying that every science fiction story qualifies. Many don't.

The fundamental question explored by science fiction, however, is "What if?" It is from this angle that science fiction authors address the question of what makes us who we are.

While a philosopher explores issues of what makes us who we are, he does so through careful argument and discourse. When a scientist does so, he seeks factual answers and reasons based on emperical evidence. When a science fiction author does so, he sets up a scenario and shows the (hypothetical) consequences.

The products of this sort of exercise vary from beloved classics to pieces of pop culture. They have been known to lead to some pretty interesting (if obscure) philosophical debates between fans... and have a considerably higher "geek appeal" factor than Descartes.

Sorry, Rene, but your work just doesn't have what it takes to be debated by Vulcan-eared Trekkies at a geek convention. Roddenberry has you beat on that count... and no, I don't use "geek" as an insult. I've earned my geek stripes, thank you very much.

And, of course, all of this begs the question -- why am I bringing this up on an autism blog?

Well, I plan to indulge my inner geek when I write about issues of identity and autism. I can't write purely serious science and philosophy pieces all the time, now can I?

Friday, September 11, 2009

Answering Machines

I hate answering machines. I really, really do. I hate voicemail, too.

Okay, so I don't really hate mine. I can listen to messages someone else has left me just fine.

I just have trouble leaving messages.

And yes, this can act as a barrier to employment -- I get incredibly awkward when trying to leave someone a message... and three guesses what that does to the impression my message leaves a potential employer with?

Saturday, September 5, 2009

On the More Subtle Forms of Discrimination

Ever since I completed my last practicum, I've been job-hunting. Not only do I need income, but I need additional supervision time before I can sit the BCABA exam.

I've done the full coursework for the BCBA exam, but I need to get a Master's before I can sit that one. The need for additional supervision is just part of that.

Anyway, that last part means that I need to find employment in a fairly narrow field. I'm not particularly picky about the broader type of program I'll work in, but I am picky about ethics. Frankly, I believe that the code of professional conduct that the BACB enforces is absurdly insufficient (and insufficiently enforced, but that's another matter). I've already had to throw out several of the opportunities that I've found because of this. I categorically refuse to implement a program that involves restraint or seclusion, for instance.

One of the big obstacles towards me finding work in the field, however, is that I don't know who's hiring. Online listings haven't been much help here, either.

Normally, social networking strategies make finding a job -- or at least finding who's hiring -- under such circumstances fairly easy. I am spectacularly bad at them... and saying so is a massive understatement.

In as far as this is inseparable from the fact that I am autistic (let's not go into the chicken-and-egg mess that a discussion of causal attribution here would get into), this problem could be viewed as the result of a form of statistical discrimination. Personally, I just view it as an annoyance and another one of life's many challenges.

Another example of this sort of thing that I've run across has been in the realm of employment applications. Since college, I've accumulated what I like to think is a pretty good collection of professional references. My academic references aren't bad, either.

However... due to their nature (i.e. most of them are people I've worked with), I'm S.O.L. when a potential employer asks for non-family, non-professional references. Sure, I know people outside of work and family, but there aren't exactly that many who I would feel comfortable with asking something like that. It's a real dilemma, and not an easy one to solve (especially since I did two practicum semesters at my postgrad university, meaning that I've worked with most of my professors).

And to think that this is supposed to be the easier set of references to get.

What's worse is that I know exactly why they want that sort of reference. It's hard to be upset with them for that.

That doesn't change the fact that it can easily be a major barrier to employment for an autistic individual.

Friday, September 4, 2009

Scary, scary figures

I recently came across this piece by the LA Times. Frankly, I'm scared. Epidemiology may not be my field, but this is far, far worse than I'd imagined.

The mathematics of mass vaccination are complicated, and the level of vaccination required to achieve herd immunity varies between illnesses (or even strains of the same illness), but I can't think of any illness where a vaccination rate of 13.5% is enough to provide such an effect. That is, admittedly, the most extreme example on the list, but I could say the same of a vaccination rate of 50%, which is much more common. Generally speaking, a vaccination rate of anywhere from 85% to 95% is required for herd immunity to provide any real protection.

They might have well posted this data as an article, and labelled it, "California kindergatens are fertile breeding grounds for some of the nastiest diseases circulating in the world today!"

I'm beginning to suspect that it'll take a genuine tragedy to stop Jenny and her brand of idiots. In the meantime, her kill count keeps rising... and, for every additional unvaccinated child, the scope of the inevitable tragedy, when it comes, grows.

As I said, I'm pretty thoroughly scared by this.

Wednesday, September 2, 2009

Dan Marino Autube Response

I recently did a recorded speech for the Dan Marino Foundation's Autube project. Overall, I'm pretty happy with the content of the speech, but... less so... about how it came out on the recording. I suppose that I still need work as a public speaker.

For what it's worth, the audio of my speech is available here. It was in response to Ari Ne'eman's question of what the largest issue is in autism education today. The full text of my speech was as follows:

Hi, I'm Alexander Cheezem, an adult on the autism spectrum and a member of
the self-advocacy community.

I must confess that when I heard that Ari would be introducing education as this month's topic, my first response was to inwardly groan and to think to myself, "Are there any controversies in autism that don't tie into education?" To be honest, I think that the answer to that is "no". Beyond simply the issues involved in educating autistic students, we must consider how we educate parents, professionals, and even the educators who will be teaching the students we're talking about educating... regardless of who those students might be. And then there's the issues of peer education, community education, and employer education, just to name a few, each of which comes with their own metaphorical can of worms.

Personally, I don't believe that these issues can really be separated. Each impacts and informs the others.

That said, it cannot be denied that some issues are more fundamental than others. For instance, many of the controversies in autism education today center around the issue of what the goal of educating autistic students is, and disagreements on that issue further complicate the subsequent debates. Until a consensus is reached on these issues, the clinical and special education communities will remain divided against themselves.

In turn, it is important to keep in mind the limitations of the methods we're talking about. While it's true that brain plasticity is a complex issue and educational methods can alter the brain in strange ways -- the cases of the hippocampi of London taxi drivers and the effect of prolonged blindfolding on the visual cortex being prime examples -- the underlying neurological differences that we refer to as "autism" are not fully understood and, in some cases, not even accepted as existing. The best evidence is, however, that no current educational intervention addresses them.

Or, put another way, it is not possible to make an autistic person quote-and-unquote normal through education. It may be possible to make an autistic person act like their neurologically typical peers, but it is my belief that insufficient scientific and ethical scrutiny has been given to the issues associated with this.

For instance, autistic people have a number of atypical strengths. A number of authors have explored these extensively in their work, much of which is published in peer-reviewed journals and largely ignored by the autism education establishment.

Additionally, many behaviors that seem "odd" to neurologically typical individuals serve or may serve important functions for persons of autistic neurology. Rocking, hand-flapping, and so-called "stereotyped" play styles come to mind, but there are others. Teachers also often want to quote-and-unquote teach behaviors which serve an adaptive function for typically-developing children but may be useless, stressful, painful, frightening, or otherwise maladaptive to an autistic child, such as pointing, eye contact, or quote-and-unquote appropriate gaze. It is my belief -- and the belief of many others -- that the ethics of these attempts need far more attention.

Moreover, value-laden and supposedly scientific judgements of what people "should" be have historically been prone to error. One of the more famous examples of this was the psychiatric diagnosis of drapetomania, popular in the mid-1800s, which pathologized the desire of slaves to free captivity. Other, more recent examples include left-handedness and homosexuality.

It's worth noting that all of these involved humiliating, painful, or otherwise harmful so-called "treatments". The suggested "cure" for drapetomania was whipping. "Treatment" for left-handedness often involved artifically disabling the left hand in order to force the victim to use his or her right hand in its place.

As for homosexuality, the less said about the so-called Feminine Boy Project, the better. Suffice it to say that at least one of its victims later attempted suicide... and that that is only one of many examples of the harm it caused that I could throw out. The Feminine Boy Project was, however, just one of many humiliating, harmful, and otherwise unethical attempts at treating the supposed mental disorder of homosexuality.

In short, even the idea of normalization runs across a number of ethical problems that have been largely ignored by the educational establishment.

Beyond those inherent in the idea of normalization for normalization's sake, however, there are larger ethical issues. For instance, is it approprate for our educational system -- as a subsidiary of our government -- to decide what is or isn't an acceptable aspect of our children's future identities? The ethical debates here are long and hard, but rarely applied to issues of autism.

Is it appropriate for any group to determine what is or isn't acceptable behavior or necessary knowledge for another group without that group's involvement?

My response to that one is to echo the central credo of the disability rights movement: "Nothing about us without us!"

And, of course, we then proceed to get into the tangle of issues that I mentioned at the beginning. Welcome to the wild and wonky world of autism -- where nothing is ever as simple as it seems. The tangles often give me headaches, and I deal with them every day of my life.

Another Example of Bias in Science and the News

I'll also have to admit that neuroscience isn't my area of expertise... or even an area of particular interest for me (beyond the subfield of cognitive neuroscience, which is of interest to me to the extent to which it provides useful evidence for theories in cognitive psychology). This isn't anything against the field -- I just don't personally enjoy reading these studies nearly as much as I do other sorts.

That taken care of, a recent MSNBC piece contains the following quote from an autism researcher whose name they didn't spell (but I very strongly suspect, based on my knowledge of autism researchers, the pronunciation given to the researcher's name, and his stated institutional affiliation to be Dr. Eric Courchesne -- please correct me if I'm mistaken):

We discovered that at birth the brain is near-normal in size, but by about twelve months of age the brain has grown too large, too fast, which suggests that mechanisms that regulate how the brain grows have been derailed in this disorder.

I pulled this specific quote because it's an excellent demonstration of a peculiar form of normocentric bias that pervades much of the autism world. There are a number of other problems with it, but for now I just want to focus on that one. It's worth noting that there are a number of other spectacularly problematic quotes in the piece, however.

I was going to go on a rather long rant about the subject, but then I realized that someone else had already done a pretty spectacular job of highlighting the problem. In essence, he's assuming that there's a single, "good" course of brain development (the one that most children show) and that all deviations from this course must be harmful. This is not the case.

Another case of "abnormal" growth that I can point to is in the hippocampi of London taxi drivers, a direct result (as far as we can tell) of the fact that they have to memorize a simply absurd amount of information regarding the layout of a pretty large and chaotic city... unless they navigate by GPS, and those that do don't show the "abnormal" growth I'm talking about.

Given the known functions of the hippocampus, this shouldn't be too surprising.

So I won't deny that the patterns of growth the doctor is talking about are interesting. I do think, however, that his interpretation is completely inaccurate and highly biased. If anything, I think the reports he's citing are evidence in support of the EPF model of autism... but we'd need further research to get something directly citable (without a lot of interpretation and discussion) as evidence in a primary paper on the subject.