[Expletive] the LAPD

It saddens me to report that Steven Eugene Washington, a twenty-seven year old autistic man, was shot to death by the Los Angeles Police Department yesterday morning. The officers managed to kill Steven with a single bullet directed at his head. Though Steven was, in fact, completely unarmed, he committed the double crime of being autistic and a man of color. Now Steven is dead, and the LAPD is responsible for yet another instance of unwarranted police brutality. These are the people who are supposed to be protecting us?

The LAPD should be fucking ashamed of itself, and I hope that we end up getting more than the usual canned crap about mistakes and possible threats and blah blah blah. American police forces, particularly the LAPD, have been responsible for far too many "accidental" deaths. We need real change to our police force and we needed it yesterday. In the next few days you'll probably hear calls from various advocacy groups for more police training about autism. I fully support this.

However, I fear this is not enough. The system needs more than band aid solutions. We need to permanently overthrow the terroristic system of shooting first and asking questions later. As this tragedy and so many others have shown, it is almost always the most marginalized people in society who suffer the consequences.

I hope to see real change and accountability within the LAPD, and soon.

[Side note: This is not the main purpose of this post, but I can't let it go by without comment. I am thoroughly disappointed in the family members and journalists who chose to represent Steven as mentally "a 12 year old" and the like. This is not true--Steven was 27, period. Having neurological impairments does not mean actually being younger than one's actual age.]

Blogging House Rules III: The Autism Mother

As promised, I'll be blogging a bit more about House Rules, and in the future Nightstorm and I will be doing some kind of review on our blogs. For now I'll continue to document my reactions to the book in an admittedly haphazard fashion. This post focuses on the book's mom, Emma. I don't think this post is particularly spoiler-y.

Emma, like most of the characters in this story, embodies too many viewpoints at once and is, as a result, rather incoherent as an actual character. She is a composite character; I doubt any actual autism parent resembles her. Nevertheless, discussion of her does provide a way to discuss various issues involved in autism parenting. I feel obliged to provide a disclaimer that I am not myself a parent (yet), but I do have experience of being on the other side of that equation and have strong opinions on the subject.

The problems I see with Emma go in two very different directions. On the one hand, she holds some truly asinine views about the child she supposedly lost (as I have previously discussed) and sees her son as broken and in need of fixing. She is pretty far into the biomed nonsense. She whines a lot--about how Jacob is supposedly keeping her from having friends, from having a non-crappy job, and doesn't really care about her or anyone else. Constant, constant whining about the loss of the "normal" child she feels entitled to. (Remember, her autistic son is 18 and has been diagnosed at a young age.) In what is perhaps the most asinine line of the book, Emma says this:

I suppose Theo bears the brunt of all my dreams. I hope for Jacob to blend into the world more seamlessly, but I hope for his brother to leave his mark.

The ableism here is quite self-explanatory.

So Emma is quite anti-neurodiversity in many ways, it would seem. Yet despite the asinine views she holds about her son, her parenting of him is at times too coddling, too accommodating. (This is exacerbated by the fact that Jacob has way more autistic "quirks" than are likely to be found in any single human being, but for the sake of this analysis, that's not as relevant.) She cooks meals for him according to an elaborate plan of Color Food Days (i.e. all white food, all blue, etc.) This apparently involves cooking new meals every single day. She arranges the family's schedule around Jacob's favorite TV program, which comes on at 4:30 every day. She even went so far as to call the power company during a power outage and whine about how the power outage was "really" an emergency for her family because she has an autistic son and the TV show is part of his routine. Funny, that--I was under the impression that power outages were emergencies for everyone!

I think it's a strawman to say that neurodiversity people "expect the world to revolve around our quirks." That isn't what we're asking, at least outside of a few random people on various message boards. But Emma, who holds anti-neurodiversity views, really is expecting the world to revolve around her son's (ridiculously numerous) quirks. And then she complains about feeling confined in her life! Whose fault is that? Not her son's.

Emma/Picoult is guided by the fundamentally mistaken assumption that autistic people are so rigid that we are incapable of learning and adapting. It's insulting. This ridiculous assumption leads them to believe that parenting an autistic child means catering to one's child at all costs, or else risk inevitable violent meltdowns. (abfh has recently done a good job demystifying various stereotypes about autistic people, violence, and meltdowns.) Which is not true and does all of us a disservice.

While neurodiversity proponents typically advocate for parents to consider their child's needs and limits, I doubt you'll find very many of us who approve of Emma-style parenting. Au contrair, I think this kind of treatment is stifling Jacob's growth and learning. Everyone, autistic or NT, needs the skills to cope and adapt, and Emma is denying him opportunities to learn that. And it's a truly horrific way to parent an autistic child, though fortunately I doubt that many non-fictional parents actually do this.

My biggest issue with my own parents, in short, is an all-too-often failure to perceive that I have different limitations than a neurotypical person. Emma has the opposite problem. She expects too little of her son, wanting just for him to "blend in," all while coddling him to the point where he isn't given any real opportunities or independence. I don't recommend either method, but if forced to choose, I would go with my parents'.

In summary, Emma's character is rather incoherent and self-contradictory. She represents the worst of autism parenting in several ways--first, by having such abhorrent views of her son and treating him as though he needs fixing; and second, by denying him opportunities for personal growth.

Picoult is very didactic as a writer. Well, let this be a lesson in how not to be an autism parent.

Links: Fearing for Public Education in the U.S. Edition

The past week has brought distressing news about public education in the United States:

In North Carolina, a teacher calls a student a "loser" on her paper and takes 20% off.

In Mississippi, a high school cancels its prom rather than allow a lesbian student to attend with a date, hence making an already marginalized student a strong target for bullying and abuse.

And in Texas, conservatives win the battle to rewrite the history curriculum (despite not having consulted any actual historians). The new curriculum will emphasize the importance of God in history (?), whitewash the history of racism and other inequalities in America, and omit everyone who's not a white male Christian from the history books. This is in spite of Texas's large Latino population. The new curriculum also demands omitting any mention of institutionalized racism. Ironically, the whole debacle is an indication of institutional racism.

When will public schools live up to the ideals of liberty and equality which conservative "patriots" trumpet?

More Thoughts on Robison

After thinking about it for a few more days, and from reading comments here and elsewhere, I have revised my thoughts on John Elder Robison and his position at Autism Speaks. While I still find his decision to join up with Autism Speaks to be rather dubious, to say the least, I can somewhat understand his good intentions in doing so. I suppose that it was inevitable that the first autistic to join Autism Speaks was going to end up as a pariah among a large portion of the autistic community. But, nevertheless, we have been asking the organization to give us autistic representation, and now they have done so, if only in a very small way. (I note that Robison is still only one of thirty on the Scientific Advisory Board, and that there are still no autistics on the Board of Directors, which is where most of the major decision-making happens.) As much as I still harbor strongly negative feelings towards the organization, I have to commend them for that. I hope that it does not take another five years for the next autistic person to be appointed.

I also retain my skepticism about Robison and his priorities, but of course it was unlikely that the first autistic appointee would have views that strongly resemble my own. Robison is a better choice than some, and I can't help but be heartened by the negative reactions which several prominent anti-neurodiversity bloggers have towards his appointment. (If only he would stop cozying up with the Age of Autism crowd.)

This appointment does not change the fundamental reasons why many autistics and allies oppose Autism Speaks. I acknowledge that Robison could change the organization to some extent--but I personally doubt that he will, based on his views and previous pattern of advocacy, as well as the fact that he is still only one person among many. And until we see actual change in Autism Speaks, the criticisms against the organization remain quite valid. Robison has said that he supports the majority of funds going towards "research" (including causation research). Even if Autism Speaks does raise the percentage of funds directed towards services from 4% to 6%, or something, we are unlikely to cease our criticisms of Autism Speaks, and with damn good reasons. Their model of autism advocacy simply is not one which represents our priorities, and no appointment can change that.

Celebrity Autistic Teams Up With Autism Speaks

I suppose it was inevitable that a celebrity autistic would join up with Autism Speaks, and now John Elder Robison has done so. I note that it's taken Autism Speaks "only" five years to respond to ongoing pressure from autistic self-advocates and allies to appoint its first autistic. At this rate, we should have two autistic people involved with Autism Speaks by 2015.

I am rather disappointed in Robison's decision--though I'm unfortunately not shocked by it, having been a regular reader of his own blog. I see in his latest blog entry there is more of what I've come to expect from him in terms of its equivocating and pandering language. Mr. Robison writes:

One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While I'm glad to see that Robison cares about research which will help autistic people "today," I think he's not fully explaining what he means by this research. So to clarify: Mr. Robison means research that will make autistic people appear to be more like neurotypical people. This is what the TMS research which he is involved in does, as anyone who reads his blog will see. This is what much of behavioral therapy does; so much of it is focused on neurotypical emulation rather than genuine education. This is medical model-type thinking which focuses on "fixing" individuals rather than seeing how we might best educate them and provide for their needs. I expect that this will continue to be the direction that Autism Speaks-sponsored research will take--in addition to, of course, the causation and genetic research.

Note that Mr. Robison--no doubt appealing to his pro-cure supporters, Kim Stagliano among them--is still claiming that causation research is "important." Why, I do not know. How does causation research do anything to help autistic people today? Nevertheless, I am disappointed by his failure to be concerned about the potential applications of such research, particularly the potential that such research might be used for eugenic purposes. I hope that his presence at Autism Speaks might steer the organization away from its emphasis on genetics research, but his equivocating comments don't suggest that he will be taking a strong stance on that. Nor do I receive any indication that he is concerned with other glaring problems in the organizations' activities and allotment of funds. Most notably, there is the organization's continual tendency to produce dehumanizing media campaigns, and the fact that only 4% of its non-overhead expenditures go towards providing services. Will Robison address these problems? His initial post on the matter does not give me a great deal of confidence.

Another part of the post that bothered me was the claim that he only wants "treatments" (cures) for those who voluntarily seek them. Yet that is unlikely to happen. Most Autism Speaks research is focused on very young children, who will not have any say in which "treatments" they receive. All autistic people are legally bound to their parents' medical decisions until the age of 18, and many are legally bound far after that due to guardianship policies which can deny autonomy. And, of course, no autistic person is entirely free from social pressures to become neurotypical. Hence Robison's insistence that he wants all "treatments" to be voluntary doesn't mean very much, in a real-world context. That is the kind of thinking we need to do about scientific research: what kinds of real-world implications does it have, and how are we to evaluate the ethics of conducting and implementing it? (Please note that I am not saying that I am opposed to all autism research. I just think that a lot of it, including most Autism Speaks-sponsored research, is in dire need of ethical interventions.)

I don't think there's any way for me to say this next part without sounding abominably rude, but I feel compelled to nevertheless. In reading Mr. Robison's book, he struck me as someone whose sense of ethics is in serious need of fine-tuning. I know this sounds harsh, but I honestly don't know what else to say about a person who claimed to be panhandling in order to "help orphans," when he was in fact raising money for an elaborate prank on his high school teacher. (At any rate, at least Robison succeeded in countering the myth that autistic people can't lie.) In another example, I felt that Robison's discussion of marriage was blatantly misogynistic, and I found it appalling that he tried to use autism/Asperger's to justify his sexism. I do not mean to say that Mr. Robison (a sometimes commentator on this blog) is a bad person or anything so harsh. But I do have serious concerns about his ethics, and I am not optimistic about his capacity to change Autism Speaks. This news says more about Robison than about any indication that Autism Speaks is changing its directiion.

Shooter Had History of Neurotypicality

No, that's not an actual headline. But I greatly look forward to the day when we do get these headlines.

Right now, our media sees no problem in smearing millions of people by association because of a diagnosis they might happen to share with a criminal.

We need to think critically when we hear these kinds of stories--and remember that:

1) People with mental illness and other similar conditions are much more likely to be victims of violence than perpetrators.

2) Most people who commit crime are neurotypical.

These salient facts won't be making any headlines, unfortunately.

Blogging House Rules II

[Post contains a general discussion of Jodi Picoult's House Rules, but few if any specific spoilers.]

Contrary to certain stereotypes about autistic people, I love reading fiction and always have. Some novels feel like great friends to me. House Rules is definitely not one of those. In fact, I'm not sure that House Rules is even much of a novel at all. The latter part of the book too often feels like Lengthy Exposition About Asperger's Syndrome Which Just Happens to Be Part of a Novel. It's very didactic. As someone who definitely doesn't need to be educated in this area, it's really quite tedious. If I wanted to read autism-as-pathology literature, I'd pick up any number of nonfiction books on the subject. The primary purpose of a novel is not to provide a 500-page Public Service Announcement.

And as someone with this (soon to be merged) diagnosis, I really don't want Picoult to be the one to deliver this particular Public Service Announcement. I acknowledge that she does her research pretty thoroughly. She's clearly read a number of books on the subject. I know from her acknowledgments and interviews that she's met a number of autistic kids and teens and their parents. But this does not for a fully realized representation of autistic people make. While I commend her for doing a better job than some in creating a fleshed-out autistic character, the book still reads too much like an attempt to work every single autistic trait (and stereotype) into one character. And that flaw is, in my view, fatal to Picoult's attempt to create a compelling work of fiction and a fully realized autistic character.

Typically, even the special interests and talents don't seem entirely coherent. I get that her character had to be a forensic science geek for the plot to work. Okay. But was it really necessary to give Jacob virtually every other stereotypical autistic interest and talent--ability to take apart computers, an affinity for numbers, etc.? Why couldn't fantasy novels be another one of his interests?

Picoult doesn't recognize the variability of the autistic experience. The book sets up Jacob as a prototype for Typical Asperger's Autistic Person. There isn't any acknowledgment of our diversity, not least because the only other autistic character is Henry the Deadbeat Dad of Maxine Aston's imagination. And he's just like Jacob, except for being less obviously impaired. Autism in House Rules assumes a one-size-fits-all model.

Nor does Picoult acknowledge our ability to learn. Her view of autism is very flat and mechanical, centered more than anything around these formulations:

Deviation from Plan/Sensory Trigger = severe meltdown in every instance

Figure of Speech/Metaphorical Language/Sarcasm = complete and total confusion in every instance

Attempt to Be Social = talking about special interest in every instance

Neither formulation is always true of every single autistic person. In fact, autistic people--like non-autistic people--do not have perfectly predictable behavior patterns. (In other words, we don't always react the same way to the same stimuli.) Nor do we spend the entirety of our lives in complete confusion every time someone uses an idiom. We are capable of learning skills. But Jacob doesn't seem to have changed much from childhood--except for his increased interest in socializing, thanks to the wonders of biomed. In her attempt to cast us as perpetual children, Picoult refuses to show the possibility of our character development. In her effort to make Jacob seem Really Autistic, she turns him into a caricature which doesn't resemble any real autistic person in whole.

This autistic person, for instance, is pretty good with figurative language. This meant that I didn't miss out on any of Picoult's ridiculously obvious, melodramatic metaphors--in this book or in any of her other books that I've read. How fortunate for me that I am able to see that Jacob and his brother being trapped in a boat and Jacob taking up all of the oxygen is a metaphor for their lives. (And I can even use sarcasm, too.)

More on this book will likely be forthcoming.

Blogging House Rules I

Given my obsession with Jodi Picoult's House Rules, this shouldn't come as a surprise to readers. I just can't help myself on this score. My copy arrived this morning from Amazon, and I've started reading it. It didn't take long for me to figure out that I would need some kind of blogging therapy to get me through reading this book. And by therapy I mean therapy-for-dealing-with-bigoted-ideas-about-people-like-me therapy, not I'm-so-broken-because-I'm-not-neurotypical therapy. There is a difference. And so I present the first part of my review of House Rules.

[Note: The rest of this post contains spoilers through page 71 of House Rules.]

My mother always told me that if I can't say anything nice about someone then I shouldn't say anything at all. I don't really believe this applies in all instances, but in the spirit of that I'll start by saying some nice things about Jodi Picoult. She is clearly working to make her autistic character a sympathetic one, and it does seem from reading her acknowledgments that one autistic teenager vetted the book for accuracy. (Yes, yes, that's hardly engaging with the autistic community, but it's better than nothing and it's better than what some authors do.)

But even though I appreciate her attempts to make Jacob sympathetic, too much of this reads like autism zoology to me, and by that I mean that the book is encouraging its readers to gawk at how weird autistic people are. Picoult insists on giving her character practically every single possible autism quirk (except, thankfully, for being a savant). I've read several of her interviews, and the information she has on her website, and it seems pretty clear that she's created a pastiche of different anecdotes that she's heard from the parents of Asperger's autistic children. This does not a fully developed character make. At the same time, I do acknowlege that Jacob seems far realer than many other fictional auties penned by non-autistics--Christopher from The Curious Incident for instance.

Entirely too much of the book is spent on dwelling on Those Poor People Who Have to Put Up With Autistic People, especially the family members. It's trite and offensive. Are we supposed to sympathize with Jacob's brother Theo, who breaks into people's houses in response to his family life?

The book does suggest some of the positives of autistic people--if not the autistic experience itself--but the stronger message is that autistic people are broken and in need of fixing. The mom in the book (Emma) isn't Jenny McCarthy-level ridiculous on the issue of vaccines, but she nevertheless believes in some kind of vaccine "link." This is the supposedly moderate position which many anti-vaxxers take in order to disguise the extremity of their views. For Emma, "Asperger's is a label to describe not the traits Jacob has but rather the ones he lost" (5). When did he "lose" these traits? Around the time he was vaccinated, of course. Urgh. (Never mind that you can't accurately observe the social development of a one and a half year old--no, it's much more dramatic to talk about a vaccine "link" which steals normal kids away from their parents.)

Emma is a biomed mom, though, even if Picoult tries to hide it. He's on the GFCF diet. And, well:

Every day he takes a multivatim, a taurine capsule, and an omega-3 tablet. The taurine prevents meltdowns' the fatty acids help with mental flexibility. He lifts the newspaper up in front of his face as I set down the two treatments he hates the most: the oxytocin nasal spray and the B12 shot he injects himself, both of which help with anxiety.

Let me get this straight: Emma knows, somehow, that not only do these "treatments" "improve" autism, but she knows exactly how they work? For goodness' sake, even many of the quackiest DAN doctors you'll find don't claim to know the mechanics of their snake oil at this length of detail. And B-12 shots every day? Do people actually do this? I'm not as knowledgeable about biomed quackery as many of my readers are, so I'm asking for you guys to lend your expertise on this one. The idea of someone being forced by one's mother to take a shot everyday to make them act more normal is repulsive to me. And doesn't B-12 come in pill form, anyway?

Needless to say, it is totally irresponsible for Picoult to indicate that these are "treatments" for autism, or that all parents of autistic children inflict these misguided "treatments" on their children. I don't have exact numbers on it, but it is only a minority of parents who believe in the vaccine connection. Similarly, the majority of parents don't even do the GF/CF diet, let alone all of this biomed crap. I guess we should be grateful that Picoult stopped short of advertising chelation, Lupron, and hyperbaric oxygen therapy. (Though, for parents who are misled by DAN doctors, vitamins and the diet may well be the "gateway drug" to more troublesome treatments--not that these treatments are completely harmless, anyway. The GF/CF can cause calcium deficiency, and there have been reported incidents of autistic children becoming ill because they were given too many vitamins.)

I would hope that most people wouldn't get their medical information from Picoult, but given that an awful lot of them are getting it from Jenny McCarthy, it's hard to be very optimistic. I don't know if we're supposed to see to see the irony in that while Emma touts biomed "treatments," Jacob is pretty clearly on the spectrum in spite of ingesting all of that snake oil on a daily basis. But wait--I thought that stuff was supposed to help! I'm pretty sure this is unintentional irony, though. I guess Emma is like Jenny after all.

In any case, a lot of people will be getting the idea that autistic people are broken from this book, and that bothers me even more than the biomed-evangelism-passing-as-science. That's the message we get from the book: autistic people hate being autistic and only want to be "normal." Autistic people can't have friends. Autistic people can only get dates if girls with siblings with Down's syndrome pity us enough to "look past the Asperger's." (And, no, I'm not making that last part up.) Of course I realize, being autistic myself, that these things can be incredibly hard for autistic people. But the idea that we can't ever have friends at all (unless our mom pays someone to be our "social skills tutor") is just an offensive lie. So is the implication that we can't ever adjust to changes in our routine. The world is so overwhelming and non-hospitable to us that we're often given no choice but to learn at least some coping skills by the time we're 18. Jacob's brother whines about their household being arranged around Jacob's quirks, but he as a neurotypical gets to have the entire fucking world arranged around him. Yet somehow we're the ones causing everyone else's problems.

And now we get to Jess, the social skills tutor and her schmuck of a boyfriend, Mark. Jess gets paid to help Jacob with his social skills. She wants to work with autistic kids in the future because she's just that kind of a do-gooding person. (She's also the victim of gastric bypass surgery, but that's a whole 'nother topic.) Yet, in spite of being so allegedly nice, she drags her asshole boyfriend along to her meetings with Jacob so that he "can get used to being around people he doesn't like." This is in spite of the fact that her boyfriend is an ableist tool who, amongst other things, repeatedly calls Jacob the r-word. And then Jesse has the gall to get upset at Jacob because the mere fact of his existence seems to threaten her relationship with Mark. And Jesse compares herself to Mother Teresa. All of this is just rather astonishing for me.

Yes, I know that Picoult is showing all of these people (such as Jesse) to be flawed human beings. But I can't help having feelings of strong discomfort with all of it. I can't help but think that she is suggesting that it is only natural that people react to autistic people this way, that they treat us badly. (Yes, even the saints who take money to be our friends, or "tutors.") And that is the main problem that I have with this book.

As I continue to read, I'll continue to blog and review it. Writing this post made me feel remarkably better about the book, which was extremely upsetting to me. So I hope that blogging about House Rules will serve a number of purposes.

Oh, and I'm totally calling Mark as the killer.