I myself am thought to be not neurotypical, according to the researchers at McLean Hospital in Belmont, Massachusetts. Possibly. I can’t remember the exact statements. They think I might be autism spectrum. Or not. I didn’t really care much, to be honest.
My daughter may not be neurotypical. Evidence is mixed. (We can definitely attest that she’s a space cadet, but a variation in personality is separate from a neurological disorder.)
So I’m used to hearing a lot of arguments both for and against autism research organisations, and the current big cheese is Autism Speaks. It has the advantage of a ton of funding and some very prominent spokespeople.
Unsurprisingly, this organisation, like almost any other advocacy organisation, think tank or, for that matter, charity of any kind in all of history, has really irritated some people. The beauty of the Internet is that every pissant has a hill to piss off of, and the Boycott Autism Speaks crowd has some legitimate points.
Mostly, I stay out of it. I’m not sure how I feel about all of this and I’m not really keen on getting on either side of the rhetoric.
But today, I saw one of those random, irritated, one-off Facebook posts that people make, bemoaning this as eugenics in the making.
Eugenics seemed a bit much, although admittedly when you have such a well-funded, influential charity teamed up with one of the most influential and wealthy companies in the world … historically, bad things do happen. Charities usually are trying their best, but they do things like support lobotomies for the sexually dysfunctional, found Indian missionary schools to stop them from living in heathen ways, systematically separate mothers and children to place the children in healthier environments with two married, Christian parents … these are just a few examples.
But I don’t hold that against them. Those were things that made sense, given what they knew, at the time. They turned out to be disastrous, sure, but hell, people were trying to do something, based on their limited information, their analysis of what was going on, and genuine thoughts of helping … no matter how unfortunate the help was.
So yeah. Charities can be a big problem. They start with a bias, just like individual humans (usually the bias of their founders), but they tend to have a lot more cash on hand than individual humans, and a lot of people with a vague knowledge of their goals but the thought that “hey, what they're doing has to be good”, and madness that way can lie. We know this.
But the current uproar — and I’m reacting to a two-sentence Facebook post that was linking a news story here, so bear with me and my suppositions, goes like this.
Autism Speaks is an organisation founded by a non-autistic person to deal with the birth of an autist in his family, and the challenges that causes. It has been widely pilloried for having no adult autists in its organisation (although one thing I read said that there are now two). The organisation is widely supported by and funded by parents of autistic children. The charity’s mission statement reads, in part, as follows:
“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism.… we work to bring hope to all who deal with the hardships of this disorder. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.”The Autism Speaks opponents are concerned that Autism Speaks does not actually recognise that there are lots of functional ways to be an adult autist. Autism Speaks’ "autism community" involves, primarily, the parents of autists and relatives of autists, rather the people who are adult autists in their own right. Their interest in preventing autism extends to a great deal of funding for prenatal testing for autism. The opposition of Autism Speaks is concerned that not only would they be prevented from existence, but that addressing their lives as “hardships” and their existences as “an urgent global health crisis” is, in fact, not realising that autism can appear in all sorts of forms, and many of these presentations are not impediments to a normal adult life, and some autistic presentations are exceptionally beneficial to society.
Neither side is wrong. Having a child with an unexpected disability sucks, and you wish there were ways to keep this from happening to others. Growing up outside of mainstream society sucks, and being told that ideally, there would be ways to prevent your existence also sucks.
Today, Autism Speaks announced a partnership with Google for hosting their AUT10K project. Autism Speaks is doing a lot of research into mapping the genomes of people who are affected by autism, and I haven’t researched this, but I’m going to assume it’s the genomes of people who are diagnosed with an autism spectrum disorder and their parents and siblings, to try to figure out what the predictive factors are.
Google’s involvement, which is buried in Autism Speaks' press release, extends to the following:
Previously, the transport of genomic information involved physically shipping hard drives. Downloading even one individual’s whole genome in a conventional manner could take hours, the equivalent of downloading a hundred feature films. The cutting-edge capabilities of the Google Cloud can overcome these limits, Dr. Ring says. “Connecting biological discoveries with the best in large-scale cloud storage and computation will advance not only autism research but the entire field of genomic medicine,” he says.While this isn’t great for advocates of conspiracy theories to wipe out autism by big business (and the irony is that computer science careers are a notorious location for adults on the autistic spectrum), the translation is follows:
“Modern biology has become a data-limited science,” adds David Glazer, engineering director for Google Genomics. “Modern computing can remove those limits. We are excited to be working with the Autism Speaks team on storage, processing, exploration, and sharing of the AUT10K data. We’re even more excited about the opportunity for Google Cloud Platform to help unlock causes and treatments of autism.” Most significantly, the AUT10K database will be an open resource to support autism research around the world.
"We, Autism Speaks, have a bunch of data, which is very difficult to access. Google, as part of their pre-existing Genomics project, has volunteered to host this data.” Presumably, Google is also paying the significant costs of hosting all this data and enormous costs of the bandwidth associated with accessing it.
As someone who lives with a Googler, I am used to hearing of the Google obsession with Having All The Data. They want the data. They live for the data. They adore the data. I can’t tell if they view themselves as hoarders or librarians or curators or what, and that’s relevant here, because curating and library work both imply that you select and discard some of the data, something I don’t personally hear of Google doing much of, but I’m not going to judge them based on a post I researched for less than an hour. I don’t know. Google wants all the data. Always. There’s a reason they have your e-mail, chat logs, mobile phone, Web browsing platform, videos, maps and phone calls, not to mention most of your Web search history. (An amusing video was made by The Onion at one point: "Google Opt-Out Feature Lets Users Protect Privacy by Moving to Remote Village”.)
However, even I can’t see how Google will benefit by having people’s genomes, and they do a lot of charitable work based on the “Don’t be evil” (now amended to: “Don’t be so evil that your in-house P.R. department can’t put a positive spin on it”), so I’m assuming they’re doing the genome thing for Autism Speaks for the exact same reason they do genome stuff for everyone else. Based on a lifetime of exposure to geekery and dabbling in geekery myself, I have grown used to moonshot ideas that will, somehow, one day, make the world better. They’re not really clear on this or when it will happen or how exactly you’re going to convince everyone to participate, but they’re going to make the world better through technology. (Truly, if you’re around engineers, you learn that to them, their technologies are a hammer and every problem in all of human history, anywhere in the world, is a nail.)
So I’m going to guess that this is yet another Google genomes thing and they’re not focusing on the P.R. aspect. That brings us back to Autism Speaks.
What they want to do is find a way to detect whether someone is autistic before they are born.
Adult autists are not keen on the idea of being aborted before their own birth. I can’t blame them. I myself was born in a very high-risk situation for Down syndrome, and only a quirk of what was happening meant that I’m alive today. I’m pretty keen on being alive, and when I wasn’t, I had a LiveJournal and terrible poetry to write.
The two-line Facebook post I’m responding to (remember that? about fifteen paragraphs ago?) stated that this was eugenics. And, yeah, I can see that … but only if Autism Speaks gets what they intend to get out of this directly, without any interruptions, deviations, or quirks in the data.
Rarely is science a straight shot. What is all this sequencing and studying of the data going to do?
It’s going to lead us down a lot of false roads. That’s no surprise.
It’s going to lead to totally unrelated discoveries. This, also, is par for the course.
And it’s going to lead to lots of analyses of variations, factors, and possible markers for autism.
Yes, Autism Speaks may one day get their pre-natal test. I’ll return to that.
But in the meantime? There’s going to be a lot of data crunching going on. There’s going to be people noting that when genes X and Y are activated together, there are much higher levels of impairment than when one or the other is activated.
Autism gets a ton of ink these days. (Correction. I’m an old woman at 32. It used to be ink. These days, it’s getting a lot of pixels.) People want to know what’s causing it, what’s a factor, why is it happening now. There’s no way to analyse that without research. Even if you disagree with Autism Speaks’ goals, you have to recognise that additional research into neurological oddities is not a problem.
Unless you believe that it’s a valid variation of humanity.
We’ve already been through this a few times. The Deaf community is notorious for this. I’ll see if you can draw from my example. (I am not going to kill a ton of time researching this. These are broad strokes and may be wrong in some minor details. It’s an allegory. Or maybe an analogy. It’s one in the morning. Cut me slack.)
A deaf child can be born to parents who are Deaf, or who are not Deaf. Frequently, these parents are not Deaf. Parents within the Deaf community then cope with their child in the same way that they would cope with any child, since they already have the tools of specialised living situations, specialised language, everything, that allows them to parent their child without impediment. (Or, rather, more impediment that every other child in this world presents. As a parent for these past 16 years, I can tell you that it’s a lot.) We’re going to leave the Deaf parents with the deaf child aside.
But most of the parents who have a deaf child are not themselves Deaf. They go through mourning, denial, anger, bargaining, Elizabeth Kübler-Ross covered this and you know these stages. So they’re not happy with this initially. No parent gets the idea that they themselves are going to have a disabled child, or a child who is atypical in a way that makes their lives harder. (Most people think they would be happy to parent a prodigy or a genius. That’s also its own issue and I’m not touching that, anymore than I’m going to go in deafness vs. disability debate.)
They try to see if there are ways to make this child normal. They research cochlear implants. They research speech therapy. They research every single thing they can find to make their lives conform, in some way, to what they expected.
Sometimes, these accommodations work. The child can learn language “on time” (there’s a ton of research on language receptive years, you have a search engine, enjoy), can learn ways to function in the hearing world, and does not enter the Deaf community, but just has a few more impediments than were initially expected.
Sometimes, these accommodations aren’t sufficient and the parents move to an area where they can arrange for sign language speakers to teach their child, to teach them, they learn about the special needs their child will have for life, they learn how to cope with these things and eventually learn how to accept that their child will have unusual issues but will also have unusual gifts. Their child will be Deaf, and part of a community that their parents are not a part of, but will also be part of their parents’ community.
And sometimes, these parents are unwilling to accept any of these things, and the child ends up suffering horribly. The child will forever be alienated from their parents’ community, which demands normalcy, and the community that would have eagerly accepted them.
…
I’m sure you can draw the parallels.
As we learn more about autism, we are going to learn about things that are factors. We are going to learn a lot of ways to prevent it. And many of those ways won’t work.
We are going to learn about ways to treat autism. We are going to learn about risk factors. We are going to learn about therapies, ideas, communities, a million and one things that have been done with every community of the differently abled (some of whom are disabled) throughout history. (I use differently abled very specifically here. A disabled person cannot, for whatever reason, function independently within their society. A differently abled person who is Deaf may not be able to hear or function in a mainstream area, but when the accommodations are in place for their community, will be entirely independent.)
We are going to learn about risk factors.
And we are going to, eventually, see that test for neurological irregularity risks.
But not only people who only want perfect children will take that test. People will take it all the time. Women who have any risk factors for Down’s syndrome get an amniocentesis frequently. People will take that test before they even think about having children, the way that Ashkenazi Jews and French Canadians are tested for Tay-Sachs syndrome. People who have autistic brothers, sisters, aunts, uncles and sometimes, yes, parents, will take the test.
You, the anti-Autism Speaks activist, are a functioning adult. But autism is a label that is not yet neatly differentiated.
There are people with an autism spectrum disorder that are permanently disabled in ways that are truly profound. As they research things more and more thoroughly, they will sift the definition, they will figure out what markers mean what. How serious is a prenatal scan indicating autism? How likely are people with risk factors X and Z but not Y to have a child with autism spectrum disorder, and how severe will the effect likely be?
People should learn these things. Will it lead to selective pregnancy termination? Yes. Yes it will. I’m not happy about it either. But I’m not going to judge someone else’s ability to raise a child who is 95% likely to have a severe disability. (I’ll happily judge someone who’s choosing not to raise a child who has a moderate to mild risk of a moderate to mild disability. Go to it.)
You, the autistic rights activist, are in the position of advocating for autism as a way to exist. Go learn about other disabled communities that, when discriminated against and disenfranchised for their disability alone, found their own ways to cope and establish their own cultural milieu. The Deaf community is very mature. The mental illness acceptance community is in its youth but gaining some steam. (I don’t bring up communities of people who are not differentiated before their birth. If your only reason for not being a part of a community is a physical liability, you’re in a different position, as your parents likely won’t have any tools to teach you these coping skills or cultural milieu, than someone who is outside of the typical race/religion for their area.)
Find ways to ensure that autism is an acceptable way to be, and you will make it so that when these prenatal tests do show up, in their infancy where there’s no guessing how severe it will be if you get a positive result, there will be a world in which educators, community leaders and, most of all, the prospective parents, so that it no longer seems like a label of doom. It will seem like a challenge. It is a challenge. If you’re neurotypical, and you find out your child is likely not to be … it’s gonna be a challenge. (Then again, parenting is a challenge, but parents of unborn children always believe that they can prepare themselves adequately for parenting. Bless their naïve little hearts.)
You can’t fight the search for information on autism’s genetic factors, and I strongly advocate that you stop trying, because I’ve never found trying to convince the tide to stop coming into the beach to be a particularly useful way to spend my energy. It’s coming. Just like learning to differentiate the level of autism a child is likely to have before it’s born. It probably won’t be around by the time my children, now in their teens, have kids, but it will be around for my grandchildren.
Instead, focus your energies on making autism a more comfortable label for people with autism now and find a way to make these accommodations for autistic ways of thinking and being a common part of the culture.
People will always hate the different.
But in my analogy earlier? The parents who have a deaf child who can’t be fixed? They either entered the world where that child was, or they abandoned it entirely.
The easier it is to enter a world that will make sense to young children with autism and to provide support to their scared, upset, disappointed and mourning parents … the less likely it is that those children will be given up on entirely.
No matter what these researchers discover, they will not discover ways to eliminate autism entirely.
You are at a watershed moment in history here. You have the ability to build a community and a world that will welcome these people, and you are facing one of the largest influxes of population into your community that you ever could have imagined. (We don’t know why. Maybe all these researchers will have information on why the autism diagnosis spiked in the last decade.)
Don’t screw it up by getting in a pissing match with their parents, who really thought that things would be better if this never happened, and really want to prevent other people from going through this pain and alienation.
Make it better by showing the world that it’s been given a gift. You get to help determine what that gift was, and you get to help make a world that can make the most of what these young autists — and remember, you’re the ones telling us that it’s in no way a disability — can offer it. Ain’t a damn thing that will keep these kids from being autistic now. Maybe these researchers will make it so not so many of their nieces, nephews, children are autistic. But you already have a huge community, because suddenly we have a huge influx of kids with autism spectrum disorders.
Don’t try to jettison the people who come with it. (If you’re married, you may realise that no matter how much you love your spouse, they have some frankly annoying relatives. You’re just getting a whole passel of in-laws.) They’re the people who have been going through this with their children, and these children need to be convinced by you, after a lifetime of hearing how they’re losing out because of this, that actually, they’ve got cool, different things to offer.
You, the adult autist activist, need to recognise that to make a better autism community, you have to deal with the people who feel like this is a tragedy, because a child’s parents are the center of their world. You have to support the researchers where it makes sense, make your moral quandaries known, and encourage the search for information and knowledge. There’s nothing wrong empirically with knowledge, it’s how it’s being applied.
You’re worried about the applications and fighting the research that might lead to those applications … years before the applications even exist beyond a vague theory. Come on. You have the ability to make it so that aborting a child for being autistic sounds totally ridiculous. Don’t screw it up.
