January 10, 2017
“The past is never dead. It’s not even past,” wrote William Faulkner, and I couldn’t help being reminded of that line as I read the recent article “Compulsions, anxiety replace autism in some children,” from Spectrum magazine.
An estimated 9 percent of children with autism achieve a so-called ‘optimal outcome.’ But nearly all of these children years later develop related conditions such as obsessive-compulsive disorder, attention deficit hyperactivity disorder, anxiety and depression, the new study suggests.
“The majority of the group with a past history of autism are vulnerable to developing other psychiatric disorders,” says lead investigator Nahit Motavalli Mukaddes, professor of child and adolescent psychiatry at the Istanbul Institute of Child Psychiatry in Turkey.
So let’s get something straight right off the bat.
There is—so far as has ever been revealed—no such thing as a “past history of autism.”
If children who lose a diagnosis are socially compensating to such an extent that screening tests can no longer detect their autism, that probably reveals more about the weaknesses of a definition of autism based entirely in deficits rather than in core processing differences.
Autistic children don’t grow up into non-autistic adults. These children are likely suffering the utterly predictable effects of being forced to hide their autism or having their natural modes of functioning fractured. They’ve had their labels replaced, not their autism.
You can’t make an assertion like “Our results indicate that the improved status with regard to autism symptomatology is maintained over time” when you aren’t talking about a significant amount of time. People compensate differently at different times of life, autistic people can experience markedly atypical developmental trajectories, and autistic adults often suffer burnout in middle age or later from decades of the strain of pretending not to be autistic.
(The study participants had “lost” their autism diagnosis at least two years before the study commenced. That means some of them were as young as four years old when they lost their diagnosis. For girls especially, who are increasingly having it recognized by professionals that the true extent of their social communication challenges may not be apparent until adolescence, it should go without saying that this is…insufficient.)
An autism diagnosis isn’t just “lost” by a child by happenstance, like a disregarded toy or a mismatched sock; someone has to take it away. And non-autistic parents and professionals have a long history of mistaking the label for a thing with the thing itself (as does the title of this article, conflating loss of diagnosis with loss of autism) when it comes to states of being they don’t understand well. But no loss of underlying condition, when it comes to a condition that most people with it experience as a basic neurological configuration, should be considered conclusive until follow-up at 20-30 years later, at minimum—given the now-common phenomenon of autistic people first recognized and finally able to acknowledge their lifetime of effort at “pretending to be normal” in their 40’s, 50’s, or later—finds someone no longer exhibiting the core processing differences of autism. Not just compensating for, concealing, or having learned to override by brute force the core differences in information, language, and sensory processing widely reported by autistic people as central to their experience.
“You’re never more disabled,” autistic author Rachel Cohen-Rottenberg once wrote, “than when you’re over-compensating.” And the presupposition at play in this research design that, if symptoms are failing to appear on screening tests, it’s because the autism has disappeared, not that an autistic person has either learned a specific skill set or is exerting a continual effort to perform according to expectations, is one of the most basic manifestations of neurobigotry.
It must be that we are no longer autistic, because autistic people aren’t capable of learning or trying.
And it certainly can’t be that those efforts at fakery and concealment have meaningful costs to our well-being, because autistic people are not presumed to have well-being worth preserving.
Also notably, the oldest of the test subjects here were 16—still minors, still most likely living under the control of their parents. The same parents with a substantial investment in believing that their children’s autism has been successfully suppressed.
Those aren’t fair circumstances under which to expect a teenager (let alone a 6-year-old), who may have been substantially deprived of bodily and cognitive autonomy (and in all likelihood, access to competing information about neurodiversity and the narratives of other autistic people) to give an accurate self-report about whether their experiences of themselves in the world are still, in fact, autistic.
Think about what revealing that would expose a kid to, in terms of parental disappointment and potential for resumed scrutiny, mistreatment, or return to invasive and demeaning therapy.
There’s something incredibly ironic and cruel about considering an “optimal outcome” for autistic children a future in which we suffer from anxiety, depression, and a host of other psychiatric illnesses “instead” of being allowed to grow up to be healthy, happy autistic people.
I can only hope that this research helps in alerting clinicians, researchers, and parents to the central fault in “loss of diagnosis” as a desirable goal in the first place, but I’m not made optimistic by the conclusion of the lead researcher here: “Even when we stop their special education programs, we need to continue their psychiatric and mental health follow up for a long time.”
No, you need to stop trying to turn autistic kids non-autistic. It doesn’t work for gay kids. It doesn’t work for trans kids. It doesn’t work for autistic kids.
It doesn’t work.
February 9, 2015
I am oh so glad to see the anti-vaccination movement finally seeing some serious public blowback, and very, very sorry that it has taken a lot of sick kids to do it. And alternately thankful at writing like this (Vaccines Don’t Cause Autism, But That’s Not the Point. Stop Being Ableist.) being all over my Facebook feed, and ambivalent about some of its logic. (It is still well worth reading.)
IF vaccines caused autism, even in some tiny percentage of vaccinated children, then whether the tradeoffs were worth the risk might be an ethical discussion worth having. (In which I would still give a hell of a lot of weight to “Measles encephalitis will straight up kill you, autism won’t.”)
But it isn’t. Vaccines don’t cause autism, period.
A hypothetical situation: If there were some form of medical treatment that carried a risk of turning me non-autistic, I would be deeply hesitant to take it, whatever the risks of not taking it were. Not because I think being non-autistic is the worst possible fate. The experience of the 90% or so of people I know who are non-autistic suggests to me that being non-autistic is not the worst possible way to go through life.
But that’s not why I wouldn’t want to be non-autistic. It’s because, as the neurodiversity movement has gone to great lengths to attempt to communicate to the neurotypical majority, the patterns of how we innately experience the world on a neurological level are intimately entwined with our identities as people.
I don’t know what about being non-autistic is so compelling to non-autistic people. I don’t know how many of them could even articulate what it is if you asked them, but they seem attached to it, and as someone not sharing that experience, I don’t get to assume that they are wrong to be so.
Likewise, if there were some form of medical treatment that carried the risk of turning a gay kid straight, I think we would rightly express serious ethical concerns about that possibility. Not because being straight is the worst possible thing that could happen to a person. But because, as the gay community has spent decades trying to tell us, sexuality for most people is as intrinsic to identity and their sense of personhood as things like gender, ethnicity, language, or spirituality might be.
Try it: If you’re cis-gender, would you readily embrace some kind of medical intervention that, whatever its positive effects, carried the potential side effect of turning you into a member of another sex or gender? Even if you chose to accept that treatment because not dying was worth it to you, would you do it with no sense of fear or conflict?
Because the fact that being autistic or not, a man or a woman, gay or straight, cisgender or transgender, isn’t a bad or wrong thing unto itself is kind of beside the point when we’re talking about altering deep-seated characteristics that are so profoundly tied to our identities.
If vaccination could cause autism, even if we overwhelmingly decided for good reasons that the tradeoff was acceptable, that would be something we’d have a responsibility to know. It’s not because it doesn’t. In fact, a great deal of research has been dedicated to finding out whether vaccination can cause autism, and I’m resentful of that not because autism isn’t something that should be feared (though it isn’t), and not because Andrew Wakefield turned out to be wrong, but because he committed fraud and every variety of ethical malfeasance and objectified autistic people in the process, for personal gain, with no remorse whatsoever. Being wrong and eventually discovering that you’re wrong isn’t a sin, scientifically, but that’s not how we got the myth that vaccines cause autism. It wasn’t just bad study design or misinterpretation of data, it was a knowing act of fraud and selfishness that set both acceptance of autistic people, and public health, back by decades.
And don’t get me wrong—I am really appreciative and glad to see so many of my friends, so many writers and bloggers that I respect, going “You know what, I would really rather my child be disabled than dead. I would really rather have a living autistic child.” Because it’s still commonplace for parents not to feel that way, and it gets kids mistreated and killed.
But the thing is, the two things aren’t connected. You’re not risking your child becoming autistic by getting them vaccinated, because there is no relationship between the two things. And I’m honestly a little uneasy about reinforcing the link in people’s minds at all by saying “Of course I’d take the chance of my child becoming autistic to protect them from life-threatening disease,” because you’re not taking that chance.
Vaccinations don’t cause autism. And autism isn’t a death sentence. And those facts are unrelated.
And whether autism is a horrible affliction or an expression of human diversity with advantages and disadvantages like any other, has nothing to do with whether it’s okay to make autistic people boogeymen or rhetorical pawns, because the answer is “no” regardless.
Let’s take another example, of something that is generally agreed, including by the people who have it, to be pretty awful, like ALS, Parkinson’s, or Alzheimer’s disease…all of which are also not caused by vaccination. Would it be any less wrong to fearmonger about vaccines by using a popular fear of something that is pretty awful in its own right?
No—the people coping with that condition deserve just as much as autistic people not to be made pawns in an ideological skirmish, to not have their lives and struggles be made the symbols of somebody else’s irrational fears.
Would it make any sense to say, “Vaccines don’t cause Parkinson’s, but anyway, Parkinson’s isn’t the worst thing in the world?”
Because here’s another thing—you can run the risk of being ‘splainy to someone who has less positive feelings about their own condition. Autism isn’t a degenerative and pretty much universally loathed condition like Alzheimer’s or Parkinson’s, but there are autistic people who really hate it. Who attribute a great deal of the pain in their lives to autism, who wish they weren’t, who would take a cure if one were available, who really feel that it is the worst possible thing to happen to them. Usually when I talk to these people, I have to question whether it’s the difficulties of autism itself that makes them feel this way, or years and years of being mistreated for being autistic, which can be a very difficult distinction to make when you have no standard for comparison. But sometimes it is the former and not the latter of those things, and ultimately people have a right to feel the way they do about their own lives. I hope that they come to a better place eventually, but they also have a right to do that on their own time and in whatever way they need to, not by being told by someone who doesn’t know anything of their experience that they should just accept it.
And they still deserve not to be made objects of fear in the wholly irrational campaign against vaccination…because whether a subjective experience of autism is the worst thing in the world or not, is logically, factually disconnected from whether or not vaccines cause it…and they don’t.
Something else that actually happened: A few weeks ago, after the release of a Danish study purporting to establish a link between circumcision before age 5 and development of autism, a Facebook friend of a friend said something along the lines of (I’m paraphrasing) “Obviously it’s totally ridiculous, but if it scares people out of circumcising, I’m all for it.”
Which to me was actually far more offensive on its face than the persistence of fear that vaccines have anything to do with autism. Because that’s not just an irrational fear; that statement expresses a conviction that it’s okay to choose a group of people and use our existence as a scare tactic for your own ends. That if a group of people is presumed sufficiently voiceless, you can strip them of agency and the right to self-representation and use them to promulgate a falsehood that’s convenient to your own beliefs just because it’s easy.
(I don’t actually have a lot of blame for people who admit to still being afraid even though they rationally know that the connection is unfounded. Certain people and certain organizations have spent a lot of time, money, and effort to make them afraid.)
In this, it doesn’t matter how sympathetic I am to the cause of pushing back against routine, medically-unnecessary procedures on newborns. It doesn’t matter how good I think that or any other issue is. We are not your rhetorical props. We are not your scare tactics. Our wellbeing and acceptance as full and not defective or broken human beings are not your pawns for whatever your own pet cause is, no matter how good unto itself it might be.
There is one more way in which the anti-vaccination movement puts autistic people at risk that I rarely if ever see mentioned, and it’s this: Vaccination protects autistic children, too, not just non-autistic ones. Non-autistic children are not the ones who need and deserve protection from preventable disease while autistic children are the risk we run to do so. Further, most people at this point know that autism involves communication difficulties by definition, but what is less well-known is that autism often involves particular difficulty in communicating about pain or illness or other things involving body awareness. Also that pain or illness can take a particularly high toll on the communication and coping abilities of autistic kids compared to other kids. Autism is a complicated disability, and one thing that an autistic kid doesn’t need on top of everything else that they are dealing with—is the measles. The anti-vaccination movement treats consequences to autistic lives of preventable, serious illnesses as a non-issue (and the lives of immune-compromised and medically vulnerable people as utterly disposable, but that’s a whole other essay).
I actually find “Vaccines don’t cause autism, period,” to be a perfectly acceptable assertion. If you do feel the need to add an “and furthermore…,” some things to go with could be “Vaccines don’t cause autism, and vaccines also protect autistic people, whose lives count as much as yours,” or “Vaccines don’t cause autism, and autistic people are not appropriate scapegoats for your fears, so stop it.”
June 25, 2014
A coworker of mine leads nature walks to remote corners of the city once a month just to make sure that we all see something other than the inside of a dark theater once in a while. A couple of weekends ago, we went to Plum Beach in Brooklyn to see the horseshoe crabs come up on the high tide to mate and lay eggs.
It was chilly for mid-June. Rainclouds meant we didn’t get to see the full moon rising, sadly, but there are still some beautiful views of the Rockaways and Breezy Point.
Deceased horseshoe crab. One of the things we learned is that they tend to get flipped upside down on their backs in the tide. Because they have a segmented shell, unlike turtles, they have some ability to right themselves…but if they don’t succeed and morning comes, they get eaten by seagulls. So if you come across one upside down, you can help it out by using your foot to nudge it back right side up. I got to rescue 3 or 4 crabs on this night. They’re heavier than they look.
And cuter, once you get to know them.
Found one tagged by the Fish and Wildlife Service!
January 30, 2013
A friend sent me a link to this Radiolab episode (“Voices in Your Head”) from a couple years ago in response to a different inquiry altogether (having to do with certain experiences of schizophrenia and auditory hallucinations), but it was startling to me in an unexpected way.
Jad is talking to developmental psychologist Charles Fernyhough about how he believes children learn to think by internalizing external verbal processes:
CF: I don’t think very young children do think.
JE: Like, think, period?
CF: I don’t think they think in the way that I want to call thinking.
JE: What he meant, is that thinking as he defines it, is just words sounding silently in your head, and before you have those words in your head, you can’t think.
Early in the episode, Fernyhough asks us to think of a parent and child solving a jigsaw puzzle together, and the back and forth dialogue between them in which, he posits, a child learns to think. The “thinking” here, he says, is happening in the interaction between parent and child, and not internal to one or the other at all. It’s by learning to make this verbal process internal, that we become thinking people, he says. “If you watch any kid with their parents, anywhere in the world, doing this kind of thing, you’ll see them thinking together,” he tells us.
Immediately I thought, “How insulting to non-speaking or non-verbal people,” or even to people whose primary intelligence is not linguistic, but spatial, movement-oriented, artistic, or musical?
But then I was even more stunned. Wait, I thought…Is this possibly why so many people cannot imagine that someone who doesn’t talk doesn’t truly think? Why people are so highly skeptical of the genuine intelligence of someone who can type but not speak? Because most people do, in fact, learn to think by speaking and can imagine no other way?
I never did engage in the kind of mutual narration described, or individual narration about what I was learning to do; being forced to engage in that kind of communication while trying to understand or carry out a task actually badly impedes my ability to do it. I have the damnedest time getting people to understand that I’ll be better off if they show me something once or twice and then leave me alone to get comfortable with it, rather than hanging over my shoulder and re-explaining and correcting until I’ve got it perfectly, which will never happen under those circumstances. It’s also one of the major reasons why I did so badly in cognitive-behavioral therapy: Because having to speak severely impedes my ability to think. I speak by translating and selectively externalizing my internal understanding; I don’t think by internalizing what’s external.
Even my memories of learning to write are hardly verbal at all; they’re very experiential, visual, and physical. I remember the pattern of it becoming intuitive more than the words themselves.
Frequently in my line of work, I find myself defending the intelligence of dancers to other people, explaining that you just can’t expect them to be able to communicate much of their intelligence verbally. It’s just not how they work best. It’s not the framework in which they’re approaching the world.
But look at their intuitive grasp of physics, space, movement, group dynamics, and the capabilities of the human body. That is just as much intelligence as anything you can measure on a standardized test, and it never stops being astonishing to me.
Or, in college I knew an art student who reported that when she’d been painting alone for a long time, she had a really hard time switching back over into speech…like if her roommate came home unexpectedly and said hello. I have a really hard time buying that in those preceding hours, she wasn’t thinking at all just because she wasn’t doing it in words, but in color, shape, and movement.
It’s incredibly arrogant, too, the presumption that because this is how you, or even most people, learn to think about the world, that that is how it must be done, and if it wasn’t, then those people aren’t really thinking at all…that thought itself cannot occur in a frame of reference radically different from the one that most people take for granted. Or that nothing of significance could be understood if it can’t easily be translated to speech or verbal language. And that’s not even taking into account all the conditions by which someone may in fact have a very verbal understanding of the world, but not be able to physically speak for whatever reason (like oral motor apraxia). The prejudice is to assume that they cannot think or understand, rather than to look for ways that they could make their understanding known.
What I’m starting to think is that it’s not the autistic who have a theory of mind problem.
I’m at my favorite coffee shop again, like I usually am on days when I don’t have to be at work till evening. Patrons are actually sitting outside this morning, because it’s sunny, calm, and 45 degrees instead of 10. A woman smoking at the table nearest the door pushes her last fragment of baklava—shimmering with honey—to the edge of the table for the sparrows to share, and as one alights on the edge of the table to seize it, the sun for just a moment shines through its widespread wings, turning both bird and pastry a translucent luminous gold…like the bird was solidified from light itself.
And though I write poetry, there are no words I can find sufficient for the sight…not really. Even the above paragraph feels and sounds klutzy and contrived compared to what it actually looked and felt like.
If I had even fewer words than this to describe it to you, would that mean that I didn’t truly see or feel or understand that moment? I don’t think so.
February 9, 2011
I’m not a big fan of mandatory schooling, as most of my readers will already know. Okay, I’m not a fan at all. But I’m starting to think it’s about time to require everyone to read Darwin’s On the Origin of Species.
And I mean everyone.
I read it myself last year, in a campaign of reading stuff that we should’ve been assigned in school but weren’t. I was a little bit (okay, a lot) appalled that as much as I thought I knew about evolution, I had actually attained a degree in biology without ever having read the seminal work on the subject.
If you need evidence that our schools are profoundly failing to educate, consider that. Most biology students never have to actually read On the Origin of Species.
Or that, according to a Times article (On Evolution, Biology Teachers Stray From Lesson Plan) on a survey published in Science magazine last month, 86 years after the Scopes trial, only 28 percent of high school biology teachers are actually teaching the straight facts about evolution, the foundational principle of modern biology, while 13 percent are still explicitly teaching creationism.
The article shines a light on what the study calls the “cautious 60 percent” of biology teachers who in some way, shape or form, compromise on teaching evolution outright.
In what other discipline would it not be outrageous to allow 73 percent (the 60 who don’t teach evolution straight up + the 13 who openly teach creationism) of our educators to bow in deference to religious fundamentalism? But that’s what we’re doing in biology. Wouldn’t there be nationwide outraged panic if it were found that an authoritarian sect of some religion other than Christianity were managing to seriously compromise how our kids are being taught?
Yet this is what’s going on in the overwhelming majority of our biology classrooms.
One professor quoted, Randy Moore, doesn’t think that better science education for instructors will help. “They already know what evolution is,” he says. “They were biology majors, or former biology students. They just reject what we told them.”
But do they really know what evolution is? I doubt it. If nearly three quarters of biology teachers aren’t really teaching evolution or teaching it in a half-hearted way; or if they, like me, got through school as high-achieving biology students without ever reading first-hand the definitive books on the topic, then they really might not. And fundamentalist churches aren’t simply rejecting evolution; they’re lying about what the theory actually says and does not say. So when someone who hears about evolution in school but rejects it for religious reasons, are they honestly rejecting an accurately presented representation of evolution, or are they believing their pastor over their science teacher when it comes to what evolution by natural selection really is?
So I come down, cautiously hopeful, on the side of the slightly more optimistic Dr. Eric Plutzer, who says that “We think the ‘cautious 60 percent’ represent a group of educators who, if they were better trained in science in general and in evolution in particular, would be more confident in their ability to explain controversial topics to their students, to parents, and to school board members.”
This is a cycle that can be broken, if educators know how to stand up for the facts.
June 10, 2010
I collect a lot of links to other blogs and sites I enjoy, but I wanted to call special attention to one today, the Gulf Oil Blog, by Dr. Samantha Joye from the University of Georgia. I found this blog in response to a commenter from the “Real nerd girls” post, who, after I mentioned the women working in the Gulf to respond to the BP oil spill, wondered who they were. You may have seen Dr. Joye’s name in the news recently; she’s the leader of a research team tracking and sampling one of the two giant underwater oil plumes. (I went to UGA but did not know Dr. Joye personally…and didn’t do so well in Marine Biology, so I’m all the more amazed by her work right now.)
It’s a really beautiful blog, with both horrifying and beautiful photographs of what the team is seeing in the Gulf, and some much more detailed discussion than what you’d find in the mainstream news of what kind of science is being done on the plumes. Reading about the aspects of the spill that the team is studying, it’s stunning to realize how little we really know about deep sea ecosystems, the biochemistry of what’s happening, and the possible long-term impact of a spill like this, and how important this knowledge will be to protecting our world going forward. The conditions of the spill are truly unprecedented, and this could, hopefully, be a once-in-a-lifetime opportunity to gain the knowledge that Dr. Joye’s team is analyzing from their data right now.
May 10, 2010
I’ve always felt strongly that my chosen career field is in fact what I was fated, or maybe even divinely intended, to be doing with my life, even though the process by which I got here superficially appears so tenuous and dependent on sheer chance, even luck. So it’s especially appropriate that this article and this music video came into my life at about the same time last week, both introduced to me by fellow cast and crew members of my current production.
In Back From the Future from the April 2010 issue of Discover Magazine, Zeeya Merali explores the emergence of the hypothesis of “backwards causality,” or how the bizarre and counterintuitive rules of quantum physics predict that not only do the events of the past cause the circumstances of the present, but that the events of the future affect those of the past, and what this implies for human decision-making and free will. (Do not fear, my non-science-y friends and readers; the writing is very clear and straightforward. You don’t have to be a physicist to be able to understand or be amazed by it.)
I watched Ok Go’s music video, This Too Shall Pass, about 15 times in a row the night that a cast member told me I had to go home and google it, it made me so viscerally and irrationally happy. The story of the video is quite amazing; knowing what kind of video they wanted to make, the band enlisted the help of 20 engineers and physicists to plan it; the Rube-Goldberg apparatus took 3 months to set up, and 89 takes to obtain the footage of it running smoothly. The perfection of the mechanics, musical timing and sensory and emotional beauty of the piece are stunning for just how not inevitable that perfection was, but rather the result of voluminous planning, history, fortune, focus, relentlessness of purpose, torturous tech rehearsals, and thousands of ineffable and seemingly inconsequential decisions which lighted the path to the final frame.
Recently I looked around at my world, and my life, on a sunny late afternoon in SoHo as I was on my way back from dinner to a rehearsal and thought with thankfulness and amazement, “wow, everything here feels right right now.” I believe that the universe, or fate, or God, offers us signposts and signals, if we’re paying attention, that we’re on the path where we should be…and that’s what these two little snippets of human creation felt like, as well as reminders that your fate is not a single ultimate destination, or inevitable outcome, but the entirety of the way in which you live your life.