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.


  1. Thank you for providing a transcript, since Autube failed to do so. (This is one of my Really Big Pet Peeves about online content lately, as someone with auditory processing issues.)

  2. I'll have to bring up the possibility of the Dan Marino Foundation posting such transcripts in the future. I can see how this would be an issue, and not only for you.

  3. Codeman and Alex, we are working on providing transcripts. Thank you for your feedback! Carol

  4. ... or they'll read my blog comment before I get the chance to do that.

  5. Very interesting and provocative. (Oh, and I'm "NT" -- hah -- but wouldn't have been able to understand the audio fully without text in front of me or video.)