LibriumArcana.Games

Link

Really, I can't excerpt. I like it all.

Due respect of course to Nitram as I make my comment, but unfortunately this article feeds my deep suspicions of the movement represented, for better or worse, by Mr. Ne'eman.

I remain a great skeptic of "neurodiversity", as I remain skeptical of other disability-diversity claims, such as the more extreme ones advocated by some within the deaf community. I do believe, as I have stated before, that in an ideal world there would be no autism. Early in this article, Mr. Ne'eman makes the comment of "We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve." While I do not argue against rights and support for those on the spectrum of Autism, abandoning the search for a means of preventing Autism entirely (Autism is not the measels, and thus talk of a "cure" is not precisely accurate, in my mind, given the state of the research) is a grave dis-service to those who will be born with the more serious forms of Autism in the future.

There are, of course, many very high functioning autistics in the world, some of whom I know, and for whom their "condition" (or whatever you wish to call it) is simply an attribute of their lives, in the way that any chronic "condition" such as allergies or personality quirks might be. These people are no less "right" for their Autism than I am for my severe allergies and migraines. There are also however many autistics in the world who are not high functioning, whose autism is of such an extreme degree as to constitute an unquestionably massive and severe disability. It remains a great concern to me that in placing the focus upon servicing the integration and societal acceptance of high-functioning autistics such as Mr. Ne'eman, we may wind up failing to assist, prevent, or yes, even "cure" low-functioning autism in all its myriad of forms. Though I know it sounds heartless, not to mention discriminatory for me to say so, Autism is not homosexuality, and I would rather that we cured it than integrated it into society, in the way that I would prefer that other diseases were cured rather than "adapted to". Not every autistic is low-functioning, but neither is every one high-functioning, and as a matter of course, it is the low-functioning autistics, being both more severely affected, and (I believe, though I do not have statistics) greater in number, who should, in my view, be the focus of how autism is "treated" in general, not those fortunate enough to be able to function well despite it.

Obviously, this is not a matter of discrete choices. There is no reason that high-functioning autistics should be forced to conform to some pre-conceived notion of what "an autistic person" is like, as such a notion, whatever it is, is patent nonsense. The integration and acceptance of those with high functioning forms of autism does not by itself require anything worrisome in my mind. But in trying to re-cast autism as something other than the disease which it unquestionably is (in my mind), I fear we are, with the best of intentions, doing great harm to the (also in my mind) laudable goal of seeking to eliminate autism entirely. I fully understand why high-functioning autistics would take exception to the notion that autism is a disease which should be eliminated, but to be frank, it is, and it should. Every one of us as humans suffer from diseases, congenital, chronic, and acute, of many different sorts, of which Autism in its many forms is but one. That I should suffer from one disease, and you from another is but a matter of genetics and circumstance, that is to say chance. Whether those with high-function autism are badly inconvenienced by it or not, or wish to be cured, or do not wish to be cured, those with low-functioning autism are unquestionably inconvenienced, in some cases horribly, and to treat their affliction as anything but the terrible disease it is, even at risk of offending those with milder forms of the same spectrum of disorders, is a grave and terrible disservice. It is, of course, lunacy to boil a question this complex down to a single statement, but boil it down I shall. I would rather cure the worst forms autism and thereby offend those who (probably rightly) do not view their autism as a disability, than do neither of those things.

Having offended everyone sufficiently, I will now turn around to the rest of the article. Long ago, Nitram and I discussed Autism Speaks, an organization which I had not heard of at the time, and which he had researched and discovered contemptible statistics regarding. More statistics are proposed here regarding the organization, such as the disquieting figure of 4% of the money raised being devoted to services for Autistic people and their families. I don't know what the charter of Autism Speaks is, but even if the bulk of the money is being devoted to research (to say nothing of 'administrative costs'), that seems an absurdly low figure. Confident as I am that research is the key to autism, coupled with everything else I have heard about Autism Speaks, I am becoming rapidly convinced that whoever is Speaking within that organization is not Autism.

There are things Mr. Ne'eman says regarding his goals that I agree with and things which I do not. "No more pity. It doesn’t help anybody," is entirely reasonable, and speaks, I think, to the way autism as a thing is perceived in general. Moreover, while I find the example he gives ludicrous (many children are abused and murdered for a myriad of reasons), the notion that "As long as we confuse bad things that happen to autistic people with what it means to be autistic, we’re not going to be solving the problems that autistic people face in any meaningful way", is entirely accurate. My worry though is that nobody, certainly not me, and not even Mr. Ne'eman is qualified to speak to "what it means to be autistic", as there is too broad of a range of disorders covered by the term to fit under a blanket definition. That which concerns Mr. Ne'eman is not that which concerns expectant parents who fear that their child will be autistic, nor children whose autism is so severe that they cannot functionally communicate with most of the rest of the world, any more than I, possessing alcohol allergies, could speak to the experience of someone whose allergies are so severe that to step outside their house is to invite death.

And of course, being reasonable, Mr. Ne'eman says as much: "People shouldn’t have to learn about autism from Temple Grandin, John Elder Robison, or Ari Ne’eman. People should learn about autism by virtue of the fact that there are autistic people in their schools, workplaces, and communities." So they should. Indeed for many, I would imagine that there are autistic people in these places right now. If not, then further support is clearly needed, for as Mr. Ne'eman put it (and I am paraphrasing), research into cures for pre-natal infants does not assist the millions of autistic people alive today.

However, I will leave off with a comment from one of the other readers of this article, here reproduced in its entirety, a comment that I feel very accurately mirrors many of my own thoughts in this regard:

[quote]Ari is an outspoken advocate for those on the autism spectrum. He is to be congratulated. However, as a parent of two young men with aspergers I take exception to his idea that my children’s world should revolve around the fact that they are autistic. They are many things and their autism is just one aspect of their personalities. As far as I am concerned it is not a description of who they are but what makes it harder for them to be who they want to be, whether it is as a human rights attorney or a video game/film designer. They do not see their autism as a deficit, but neither do they see it as something that society needs to give them a pass for. There are modes of behavior and societal conventions that are important and it is not beyond those on the autism spectrum to learn them. To think otherwise is to belittle those with this disability. It is also, in my opinion a huge cop-out. While because of their disability the boys are entitled to accommodations in order to achieve their goals (such as extended time in school or use of a computer when necessary, use of a tape recorder for auditory processing issues or even the support of a para professional, to name just a few)but to say that society should revolve around the fact that they are autistic is highly unrealistic and quite frankly dismissive of those on the autism spectrum. To say otherwise is to say that autistics cannot produce nor give back to society as any neurotypical can and it does those in the autism community a great disservice. It relegates them to not a protected class as defined by the US Constitution but a “pitied class.â€

The reproduced quote is quite good and sensible. No one should be defined by a disability. In addition, I take no offense at your desire to cure the worst. All I would like, really, is the chance to choose if I get hit up by this cure.

And what manner of person would deny you that choice? Is not any person of sound judgment entitled to decide what they are and are not willing to undergo? I ask this because I have been made aware (to my horror) by you and others that there are those who would deny such a choice to anyone diagnosed with autism, of any form, of any severity. Such actions are beyond reprehensible, and deserving of the scorn and condemnation that they should engender in any thinking person.

TO paraphrase someone on SDN: All this talk about a magical cure is like talking about your stance on pixie dust. This article is not about someone who wants to ban all research into autism. It's about wanting to alleviate some of the problems that autists are suffering from *right now* instead of throwing every ounce into "cures" (and the air quotes are there for a reason), blue sky research, and generally acting as if all the problems autists meet are due to autism rather than the way people treat autists.

Some of the "cures" being peddled to parents of autism are really extremely severe and psychologically damaging forced behavior modification regimes that don't actually fix anything but wrench the subject almost always a small child into behaving in a way that doesn't bother those around them anymore.

Because of this, some folks have negative associations with the idea of curing autism.

Had I not been shown documentation by Nitram and others, I would not have believed that things of that sort were still practiced. Charlatanry is too nice a term.