It's been a busy month in autism land, though. The Judge Rotenberg Center trial is ongoing. Autism Speaks and the Autism Society finally released statements against the center and its use of shocks. Perhaps the end of the center's ability to abuse and torture their clients will finally be in sight. It's a start, anyway, even if it's not the end of the Center.
Step outside of this major story, the ability of institutional settings to abuse and restrain their disabled clients, and it's easy to see that there's a world of land mines and sour grapes (those are metaphors, my Lily would yell triumphantly) in this community (and sometimes it's hard not to be the one feeling sour grapes).
What do I mean? Well, consider this two year old article on the use of worms in autism that I wrote. This week some worm-loving true believers found it and have spammed the article--we went from a handful of comments to over 110 in a few days. Their bottom line: worms are good and who cares if it hasn't been properly investigated--parents should take their kids out of country and have them infected with worms and see if it works. Our kids aren't guinea pigs, and if you have to leave the country to do it and go to Mexico, Hong Kong, or South America to do it--there's your frigging sign, people.
That shouldn't be a land mine, but it is, because some people are so convinced that the worms they intentionally put inside themselves healed them that they want to make sure they get others to do it, too. See, that would validate what they did, and if they can get people to do it to little kids, all the better.
Other land mines this month that I'm stepping in involve the release of two books involving nonverbal (or limited verbal) autistic individuals. They've come for me to review, and my policy is not to comment specifically or publicly about individuals while fighting hard against facilitated communication and its kissing cousin rapid prompting. That'll be fun, especially considering the limited evidence that the communication is genuinely the autistic individuals in question. Of course, all over autism land, people are delighted about these stories, sharing them, high-fiving, and my need to couple professional responsibility and ethics with my own mental obligation to provide fair reviews is nothing short of a quagmire.
Another big land mine I'm continually navigating is one that stretches across the online world and the real world. I'll share a specific example that occurred yesterday as I helped with the first annual Swing 4 Autism golf tournament that my dear friend James organized to benefit Autism Speaks. We just got through our walk the weekend before (we're on the walk committee, and my Cisco College students rock as volunteers!), and making sure we had it manned adequately is always interesting. If you've never participated in creating an event that will attract between 2,000 and 3,000 individuals, you've missed out, trust me. The responsibility rests on a few people who go above and beyond to make it happen. They are phenomenal individuals, and they do it for the families in the region. It is a labor of love. But, here's where the online world intersects--the heat I have gotten, the rhetoric I see daily thrown at supporters of the walks that benefit Autism Speaks, often rises to hate speech. People vilify parents for doing this event. As I explained several weeks ago on a facebook post, I proudly do this for the families, for those autistic kids who get one day a year to go out in a safe, accepting place.
Bottom line: I do it for my kids: so that they are given a chance to contribute, to see others who also have autism. I do it for my students, so that they can be at an event that helps families, makes the families feel good and welcome. I do it because it matters here in my real world, and that doesn't make me a bad parent for engaging an organization that several online autistics hate with a passion (and sometimes deservedly so). I do it because engaging all the organizations and working together to make things better is important.
For Bobby--who helped and was proud of his contribution.
For Lily--who loves all things Star Trek--and who
forms close relationships with many of my students.
For Rosie who loves to be in the crowd,
but who also tells you hundreds of times
that she's bored, but always good-naturedly.
There's a sign at our events benefiting Autism Speaks, though, that I hate. And I hate it because the boy hates it (and told one of the staff last year). So yesterday, I hid it rather than putting it out for it to be seen. And if you're familiar with AS and its rhetoric, which is designed to maximize urgency, you know what it is: it's the one that says, paraphrasing, that more children are affected by autism than juvenile diabetes, HIV, or cancer. Autism Speaks' website adds to it, though and notes that autism affects "more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome, combined" (Autism Speaks). True, no doubt, but it conflates autism as being worse than juvenile diabetes, HIV or cancer. And it's patently not true that autism is worse than those. I get it, get the need to create rhetoric that makes the public want to help, but at the same time, I watch people involved with AS interact with my children, enjoy them, and can't for the life of me see how anyone could look at my kids as tragedies to be prevented or kids in need of a magic pill to cure them. I don't think they do look at my kids that way, either, so there's an obvious disconnect between the rhetoric which is aimed at raising maximum funds, and the on-the-ground reality of dealing and interacting with autistic individuals who you want to help achieve their potential but who you think are absolutely delightful people in their own rights.
Total land mines. And more: the rash of online people who wake up to their autism in middle-age, who self-identify. What do you do with that? You don't know them and aren't qualified to judge (maybe they are and maybe they aren't), so you're in absolutely no position to judge their place on the spectrum, so you leave that alone. Why? Total land mine. Complete no-win situation. However, it's inescapable that a chasm that is absolutely uncrossable is developing between those who view autism as a serious disorder which causes significant impairment in individuals who are on the spectrum and those who are rewriting it into a personality type, and often, at that, a desirable one that makes one superior to so-called neurotypicals. Quagmire-time, and an absolute way to make sure that one is accused of sour grapes, at the very least.
The one absolute is that if you are honest, forthright and speak your mind online, someone is going to jump in your shit and make sure to rally the troops to hound you until you capitulate after all but wetting yourself or that you slink away, afraid to ever speak your truth or speak out against what you see as clear wrongs. Never mind that these critics hold their truths as inviolable and that they should be free to speak without any fear of reprisal.