"Autism Awareness" and the Dangerous Futility of Hype

How Hype Hopes to Help, but Hurts

April is "Autism Awareness Month". I have mixed feelings about this, and I am not the only one.

For one thing, "awareness" these days looks rather uncannily like socially acceptable apathy. Slap a ribbon ribbon magnet on your car, or wear the right lapel pin, and you are subsequently excused from actually doing anything real to change things for the better in the world. Sure, some people displaying the plumage of their favorite cause(s) are actually engaging in helpful action, but it seems to me more and more that the plumage has become an end unto itself in some contexts.

And even worse: a lot of people seem to be mistaking "hype" for "awareness".

Case in point: the vaccine thing. It is literally impossible these days to look at a comment thread on any mainstream article about autism without seeing at least a third of the folks in said thread crowing about "vaccine injury" and how the "answer" to autism is to stop vaccinating, how "Big Pharma" is relentlessly poisoning children's brains on purpose, and how anyone who isn't using the latest biomedical supplement whoozywhatsit is falling short of their parenting duties.

Now, I personally don't believe in a vaccine-autism correlation of any kind. The evidence just isn't there as far as I'm concerned. But that's sort of beside the point, because even if vaccines had some minute chance of "affecting the developing brain", the diseases that vaccines are designed to prevent have a heck of a lot greater chance of not only "injuring" a person, but actually killing them than the vaccine itself does.

End of story, right?

Unfortunately, not quite.

As I write this, I find myself dreading releasing it for public consumption because I know it's going to come up in some antivaccinationist's Google search, and that I'm going to end up fielding endless, repetitive, and thoroughly ridiculous comments about how I don't know what I'm talking about, and how don't I know that Jenny McCarthy cured her son, and oh my goodness haven't I read Evidence of Harm? (All such comments will be summarily deleted, by the way -- there are plenty of places online for people to engage in that kind of argument, and I am under no obligation to host such an argument here).

That, I think, is a problem.

And it's not even just the vaccine hype causing the problem. The vaccine hype itself is actually, for all its wide-ranging (and undoubtedly destructive) rhetorical force, merely a symptom of the fear that underlies it. This fear isn't new, either: "changeling" mythology (in which a real child is thought to have been "kidnapped" and replaced by an elven or faery child) has been invoked in descriptions of neuro-atypical persons for years, and it seems very likely that the original mythology may have actually been established in response to the existence of "abnormal" children. The "refrigerator mother" hypothesis also predominated for a while (according to this hypothesis, autism was the result of "cold" and distant parenting, which caused the child not to develop normal social relatedness).

And in recent years, autism has been attributed to everything from the aforementioned vaccines, to television, to cell phones, to French fries, and even to demonic possession.

Now, most of the above are actually probably dismissed by most without so much as a second thought -- I don't actually run into very many people harping about cellular phones as a potential cause of autism -- but I have seen a surprising number of people who really, really ought to know better pandering to the antivaccinationists in their public remarks. And even among people who don't accept the vaccine hypothesis or any other crack-brained theory, there is still plenty of hype to be had -- plenty of assertions that autism is a "public health crisis" and that it is "imperative" to find a cure, a way to make autistic people nonautistic and prevent anyone else from being born autistic.

Now, you might say: "But what about the ones who are truly struggling? Who can't type on the Internet the way you do? Who might be aggressive, unhappy, angry, and frustrated all the time? Who break things and hurt themselves?"

What about them?

I do not deny that people who "really struggle" exist.

And I most certainly do not claim to "speak for" (or write for) anyone who cannot speak or write at all.

But I think I can say with full confidence that hype helps no-one. No, not even the people with "severe issues". (In fact, people with more limited communication skills are probably some of the ones who stand to experience the most harm from all the hype going around these days, as they are the ones likely to be assumed to lack personhood, making it easier for some to justify a "by any means necessary" approach.)

When are people going to get it into their heads that describing people as "empty shells", "vaccine-injured", "train wrecks" and "dead souls in live bodies" is not a good way to assure that they get whatever help they need to live the best possible lives?

When are people going to get it into their heads that you don't express concern for someone by completely dehumanizing them?

When are more people going to figure out that stuff like this is dehumanizing to begin with, and not just "common sense"?

I recognize that some people deal with very tough realities. I agree that there ought to be better services and more in the way of clear, accurate information for parents, autistic persons, educators, and caregivers alike. But right now the hype is standing in the way of those very worthwhile goals.

Ranting about the "horrors" of autism will not help any autistic child get a proper education.

It will not help an autistic adult get a job, or make friends, or live in a maximally self-determined manner.

It will not add anything useful to the cognitive and neurological studies that actually have a chance of figuring out how autistic brains work.

And it will not help counteract prejudice, bullying, or lack of understanding in anyone.

In short, it is the antithesis of what "awareness" is supposed to foster.

The "Emergency Mindset"

There's a difference between drawing attention to actual horrors and abuses that might not be very well-known for whatever reason, and trying to take something and make it sound as horrible as possible in order to get it on people's "radar", so to speak.

Drawing attention to abuses is important, as many abuses really do exist. Rooting out "sweatshop labor"? Definitely helpful. Helping teenage girls in a village avoid being forced into motherhood at 13 with their 40-year-old "husbands"? Again, a worthwhile thing to do.

But stating your suicidal-homicidal ideations in front of your autistic child in order to "raise awareness" of autism?

Not good, and not likely to help, and quite likely to actually hurt.

I can see how some of the stuff that eventually gets subsumed by hype actually starts out with worthwhile goals in mind (e.g., "We need more funding so that autistic children can get better educational services").

But over time, statements expressing worthwhile goals are replaced by alarmed headlines about what a terrible "health crisis" autism is, because of the need to fund services/education more suited to persons who think and perceive and function differently from the norm.

What it looks like, based on what I've observed in doing a lot of reading and following the media on various subjects of interest to me, is that quite often people start out honestly and sincerely searching for a way to help their child, their community, or humanity-at-large. Nobody can solve every problem in the world on their own, and no individual has the bandwidth to even think on a daily basis about all the things they might potentially be able to help out with. So what most people (at least the ones who are compelled to "do something" for whatever reason) end up doing is picking a thing, or a small set of things, to focus on.

There is nothing wrong with this. The impulse to help is not a bad thing (well, unless you're a big Ayn Rand fan, but that's neither here nor there). Basic compassion is one of the wonderful things we have: its existence is one of the things that ought to give at least some hope for a future not only worth existing in, but in which all persons can live and love and dream without such a spectre of fear as many today still know. But that precious impulse must be watched and examined. Good intentions and fear can actually coexist in the mind as very close cousins, and figuring out where deep, passionate care ends and abject terror begins can be fraught in the best of circumstances.

(I've personally wrestled with this a lot in looking at my approach to longevity advocacy -- I started questioning over a decade ago whether I was truly motivated by love of life and concern for others or by bottomless existential horror. I do love live, and I do not fear nonexistence, as in nonexistence there is no self to experience fear. But I know that as a human being with an evolved survival instinct, I am always going to have a twinge of dread associated with the idea of actually dying or watching loved ones die.

And I think it's important to coexist with that twinge of dread, rather than ignore it, pretend it isn't there, or imagine that I can somehow wash it away with sufficiently "pure" intentions. What I'm trying to do with it is use it to help me see when exuberance edges into hype, so I can avoid getting caught up in the self-defeating, harmful kinds of activities that characterize hype and its effects. Because when one truly cares about something, one cannot afford either pity or flight into fantasy.)

I've seen people in all the "causes" I've come across using hype. This is understandable in the sense that hype is terribly seductive.

I would think that if any culture actually valued a particular subset of its citizens, it would consider providing appropriate care and education for those citizens a matter of course! Calling the "costs" associated with autism a "public health crisis" is as ludicrous as calling the costs associated with raising any child a "public health crisis", in my opinion. Services are not a zero sum game, despite what the purveyors of hype would have you believe.

And I don't believe for a minute that dehumanizing and scaremongering can be rationalized by the "well, at least it gets funding" defense -- even if you do get funding via drumming up apocalyptic visions in people, it's more than likely that funding will be applied in ways that don't actually address the very factors that would likely lead to better outcomes for all.

But the thing is, once you can feel justified in declaring a situation an emergency, everything feels clearer and easier. Decisions can be made more quickly, with less input. Sacrifices can be made with less thought for what is being lost. The "mundane" details of daily living can be brushed aside. Regular people take on the guises of heroes and villains and martyrs. In short, everything starts to feel just a little bit more like an action movie.

Sure, it's exciting. Sure, it can make a person feel secure in the idea that they are Doing The Right Thing.

But it doesn't work. At least not when misappropriated to apply to situations where outcomes in the absence of drastic intervention are far less certain.

The world is full of risk, and a mistake I see being made more and more these days seems to be rooted in the assumption that the world is supposed to be a "safe place" by now. But since the world obviously isn't a totally safe place (goes the logic), we need to start responding to more situations as if they were grave emergencies. In other words, people are clamoring for more hype, because hype gets attention. And attention can lead to help, funding, and yes, "awareness".

But the problem in using hype as a vehicle for "awareness" or anything else is that hype tends to devour the worthwhile goals right from under you, sometimes almost imperceptibly. And then people suffer for it, only this new kind of suffering is seen as more acceptable than the kind that the hype-driven inteventions were supposed to rectify. (And sometimes, the "new suffering" is even seen as further manifestations of whatever the "interventions" are supposed to be helping with, which leads to more hype and fear, which drives the cycle crazily forward.)

In Summary...

Believe me, I do actually have tremendous sympathy parents of autistic children right now, as there's so much crazy and hype and hysteria and confusion and fearmongering surrounding the subject of autism right now that it's a wonder anyone can navigate through it without coming out more alarmed and perplexed than when they started seeking information.

But the thing to remember is: not all autistics are children. We do grow up, and we are affected as adults by how autism is presented in the media, how autistic children are talked about and responded to, and what assumptions are made about what kinds of lives we have the potential to lead, or that we are actually already leading.

That makes "autism discourse" very much our business. It makes it my business as a person on the spectrum. We are stakeholders in all this, just as parents are, regardless of what "functioning labels" or spectrum sub-categories we've been assigned to (Asperger's, PDD-NOS, etc.) or assumed to belong to.

(And it's not all just some problem with "labels", either: undiagnosed autistic adults and children alike are still vulnerable and susceptible to discrimination, bullying, and the unrelenting stress of dealing with unrecognized sensory sensitivities and cognitive differences. Yes, labels can carry a stigma with them, but the kinds of stigma that really need to be addressed have much more to do with how people actually are (and how they are treated and responded to as a result) than about what people are called.)

In my mind, "awareness" (if the concept of such a thing can even be salvaged) ought to be geared toward encouraging people to open their eyes to difference and acknowledge that every future worth building must be a more flexible and inclusive one.

Awareness should mean actually being aware that different people perceive, think, and function differently and that "displaying a behavior" (or not displaying a behavior) doesn't mean the same thing for every person.

Awareness should mean understanding that if a person seems to "fixate" on one subject, it doesn't mean they are "too lazy" to learn about anything else, or even that they are necessarily "missing out" in any way. (The complexity of existence goes "all the way down", as far as I can tell, and I'm guessing many people would be surprised at just how much content there is in even things that look "simple" on the surface.)

Awareness should mean acknowledging that some people perceive visual information, sound, and touch differently than you do, and that they might not be able to just "ignore" stimuli that you can.

And finally, awareness should mean an openness to the very existence of different kinds of people, rather than an assumption that we only need to be more aware of certain kinds of people so that such people can be more readily changed into other, more valued kinds of people (and bemoaned as "tragic" or "limited" if this doesn't turn out to be possible).