Asperger’s / autism, genetics, & MIT ~ Part 4: A (mistaken) “utopia”

The Massachusetts Institute of Technology (MIT) has recently announced that it will soon  found a new autism research wing.  This is concerns me quite a bit.  MIT is a huge scientific/technological research facility, capable of solving mysteries of the universe and Getting Stuff Done.  I don’t want the genomic mapping and heartless erasure of People Like Us to be anywhere on their to-do list.

So, true to (my) form, various dissenting opinions started to evolve in my head, and (also true to my form), those ideas shot out like sparks in several unique directions.

Over the course of the past few days, I have frantically typed those thoughts into the Notes app on my mobile as they popped into my head.  Because these concepts appeared individually over a short time, those thoughts ended up tackling the issue from multiple angles.

So, I turned my cognitive chaos into a mini-series of posts, each elaborating on a different angle.  Here is the fourth (and maybe final?) angle: what do they expect to gain from this research?  And what would it look like?


Soooo, MIT is launching a new autism research arm.  I’m guessing that I’m not the only one who is a little less than enthused about this project.

Who knows if MIT’s efforts will succeed or fail?  The future hasn’t been written yet.  Every attempt to find genetic connections with autism thus far has proven futile, raising more questions than answers.  Over 1500 genes have been found to be associated with autism, but very few–if any–with any kind of certainty.  Nothing is solid, everything is murky.

What the scientific community seems to agree on with gusto, though, is that it’s genetically linked (which we already know), and that the needle in the haystack must be found (I have my doubts about this part).

And to hell with the medical bio-ethics.  They don’t seem to care about what we want, what we say, or how we feel.  They don’t seem to be too interested in making the lives of existing Asperger’s/autistic adults any easier.  They only seem hell-bent on preventing the future births of autistic children.  They don’t point that laser-beam desire to decode and demystify at themselves or the world at large–just us.  As if we’re the problem. 

As dressed up and sanitized as their news release is, their words betray them, easily revealing the true nature of this venture, dripping with the disdain.

Disdain for us.  For everything we are.

Herein lies the fallacy of humankind: we think that we can improve upon nature. But nature always wins, eventually.  For example, we thought we had kicked the problem of various life-threatening infections when we invented antibiotics.  Guess what?  Nature came roaring back with superbugs.  We thought we had solved the problem of infertility with the advent of In-vitro fertilization.  Not so fast, says nature (link to a Time Magazine article on a rise in birth defects as a result of IVF).

It seems as though every time we think we’re making “progress” as humans, nature throws us a curveball that we hadn’t anticipated.  The accomplishments so proudly boasted actually end up biting us in the ass.

(A quick note here: That doesn’t mean that I’m against all medical or scientific developments, of course.  I recognize their purpose and their benefits.  If I do get an infection, I won’t mess around; I’ll partake in those antibiotics.  But I also realize that the story doesn’t end there; there are consequences for every action taken against nature’s order of business.  And thus, I’ll make those decisions carefully and weigh the pros and cons, making sure it’s actually necessary before simply diving in.)

But they can’t even beat superbugs–zillion-year-old microbes a fraction of a percent our size.  And now they want to monkey with the genetic code.  To erase all genomic references to autism.

Let’s imagine, for a moment, that they succeed?

Just what do they think they’re going to get out of this?  What kind of world will be left over?  What would such a world look like?

Honestly, I’m not sure, because I’m fairly certain that the world has always had autistic people.  Autism has probably always been around.  I’m not sure there’s ever been an autism-free world.

Either way, I’m relatively sure that the world wouldn’t be nearly as interesting.  According to Temple Grandin, whom I admire deeply, if the world didn’t include autistic people, we probably wouldn’t have made many of the technological and artistic advances that we currently take for granted as part of every day life.  She says, “what would happen if the autism gene was eliminated from the gene pool?  You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.”  (Quote #2 on The Art of Autism’s list of quotes about autism, which is a total must-read!)

I love that!

I think she’s onto something.  In fact, she’s probably right.

If autistic genes were suddenly eradicated, the world would likely be a boring place.  I think a world without autism would stall in a hurry.  The remaining people would lack the ability to zero in on a particular subject, identify a particular need, and stick with it, focusing on it long enough to invent a solution and patiently taking it through the mundane process of development.

It’s been said that there is more diversity among people on the spectrum than there is among those off the spectrum, so we would probably see a dip in the variation of thinking.  Such a world probably would be too chatty, and the chatter would probably be a whole lot about nothing.  Beyond small talk, the planet would suddenly lose a lot of depth.

Trends would become that much further entrenched in society than they already are, and the leftover people would run around in circles, constantly reinventing the wheel. 

I imagine that war would become more frequent, since misunderstandings abound, and people tend to operate based on assumptions about hidden meanings and subtle, implied innuendos.  Since a higher proportion of the populace would be extroverted and possibly aggressive, fighting would no doubt ensue more often.

Essentially, it’s quite possible that a society without autism just might break down.

Humanity is frighteningly fragile as it is.  A misspoken word here, a misunderstanding there, and an impulsive, wrong move after that, could spell the ultimate endgame.  So what do those who want to see an autism-free world really think they’re protecting themselves from?

Let’s examine a few possible, theoretical motives (from their point of view, with my own rebuttals, of course!).

Violence?  Nope.  Neurotypical people seem to be the big perpetuators there.  In fact, there’s actually no link between autism and violence (link to PBS, US).  And in fact, while autism itself is not a mental disorder or illness, people who do have mental illness are no more likely to be violent (link to MentalHealth.gov, US) than the rest of the population, either.  Aggression/violence are aggression/violence, and autism is autism, and the two are entirely separate entities.

Strike one.

Do these researchers (and those who support this research) think they’re protecting themselves from crime?  Do they think that crime rates will go down if autism was eradicated?  If so, they’re in for a surprise: autistic people are actually less likely to engage in criminal behavior (link to Psychology Today) than the general population.

Strike two.

What about intellectual disability?  Are they trying to rid the world of that phenomenon, an undertaking in which eliminating autistic genes would be a first step?  Think again, researchers.  Autistic genes have been associated with higher intelligence/cognitive function (according to MedicalDaily), whether the people themselves actually met the diagnostic criteria or not.  (Think “Silicon Valley Syndrome”, in which the higher concentration of computer and tech geeks has resulted in a higher incidence of children on the Asperger’s/autism spectrum and a greater demand for educational services for those children.)  Additionally, in fact, child prodigies have a higher incidence of autism (link to Time Magazine article) than is found in the general population.

Strike three.

Is it the perceived financial “burden” of raising, educating, and supporting autistic people?  That one is harder to answer, and I don’t have any hard stats, but let’s look at both sides.  Please forgive me for the extremely pragmatic view of this particular component; ultimately, I don’t think we actually end up posing a financial “burden” of sorts, but since some segments of the population might be under the impression that we do, I have to tackle the subject in order to leave no stone unturned ❤

On one hand, autism can cost money, depending on how it’s handled.  If a child is discovered to be on the Asperger’s/autism spectrum fairly early in childhood, then, all-too-often, out come the “toolboxes” of “therapies” and “interventions” that include an alphabet soup of options like Applied Behavior Analysis (ABA), Cognitive Behavioral Therapy (CBT), Pivotal Response Therapy (PRT), Verbal Behavior Therapy (VBT), Speech and Language Therapy (SLT), Occupational Therapy (OT), and other often-traumatic approaches.  In addition, the child will likely have an Individualized Education Plan (IEP), a written document drawn up after collaboration between parents and various professionals.

Many of these interventions and adaptations may or may not foist a financial burden on the parent(s), but whatever the parent doesn’t have to pay for, the taxpayers or someone else does.  I’m not saying this is good or bad – it just is.  (I do think that many of these approaches can produce neutral outcomes at best, and traumatic lifetime issues at worst.)

But since we’re strictly looking at the numbers, we can probably agree: the costs can be high (or not), depending on the road(s) traveled.

The cost doesn’t have to be high, however.  My parents sent me to regular public school; my K-12 school career consisted of two systems–the first was quite subpar, but the second was stellar.  Both were public, and thus came at no cost to my parents other than property taxes, which everyone pays anyway.  Since we didn’t even know that I was a member of the Asperger’s/autistic neurotribe back then, and much of the services for autistic kids and their parents hadn’t yet been thought of at that time, I escaped the whole scenario, for better or worse.  Many of us adult-realized Aspie/autistic people are in a similar boat; we got through “regular” school and never cost any taxpayer any more than any other kid.

Once autistic children grow up to be autistic adults, then what?  I don’t have solid statistics about the percentage of autistic people who receive any type of public assistance or accommodations, which is probably OK because it’s likely to vary widely by region anyway.  I do know that in the United States, depending on the source cited, anywhere from 10-40% of us are employed, which leaves the rest of us unemployed, or perhaps under-employed.

I have heard that disability assistance for autistic people in the US (where I live) is slim to none.  Some of us have other disabilities for which we might receive assistance, or perhaps we’re stay-at-home partners, or perhaps we work seasonally, part-time, or we live with family, or another kind of alternative arrangement.

Other adults go on to lead what conventional “wisdom” would consider “normal” lives, but at varying internal–and financial–costs.  Some of us find it so stressful to interact frequently with the neurotypical world and walk too long among the neurotypical population that we find we need the support of counseling/therapy (I’m one of them!).  Some of us handle our stresses on our own, with varying success (yep, I’m also one of those).  Some of us have found ways to mould our lives around our neurotype, keeping the waters as fresh as possible for our “fresh-water fish” needs (I’m one of those, too).

But if we’re in therapy or taking neuropsychiatric medication of any kind, that costs us (and if we have health insurance or we live in a region with a public health system, it costs that, too).

This is–holy hell–not to imply that we’re any kind of burden!  It’s absolutely not a criticism of any kind at all.  Please try not to read it that way.  I’m simply laying out the financial factors of autism, looking at the situation from a very pragmatic, emotion-free perspective.  But that does not, in any way, mean that I’m unemotional, unsympathetic, or uncaring about this.  I’m trying to get into the minds of the people who want to eliminate us and explore what their aims might be.

Now let’s look at the other side of the financial aspect.  Because there is another side: what we contribute back to society.  It’s much easier, by comparison, to examine the tangible contributions.  There are indeed intangible or less-tangible contributions that people on the Asperger’s/autism spectrum make to society in general (not that we owe anyone anything, but here again, I’m just looking at things from a broad NT perspective).

The most obvious contribution made by autistic people involves those who are employed; this can be calculated, given the right data.  The hours worked, the productivity put forth, and the taxes paid can all be quantified by a think-tank, if they wanted to.

Other economic contributions include our purchases, the exchange of money throughout the economy in which we take part.

I’m not sure how the cards would stack if one pitted the expenses of raising autistic children and living as an autistic adult against the financial contributions of autistic adults back into the world.  But, I’m pretty sure we’re not the “money pit” that we’re made out to be.  However, when parents moan and lament about how much their child’s “therapies” are costing them, it’s tough (for NTs) not to start to see us as a gaping black hole of expense that threatens to bankrupt the world.  But I want to make it very clear that I don’t think the situation is that dire.  As we grow up and reach the age of majority, there are lots of ways in which we contribute and serve purposes in society.  (Again, not that I think that we owe anything to society or “must” serve a “purpose” deemed valuable by the NT yardstick in order to be deemed “worthy” of life; I’m just trying to figure out what all this genetic identification frenzy-fuss is all about.)

I’m thinking that we’re due for a strike four, because autistic people are not “useless”, nor are we a financial “drain”, especially if NT adults would quit thrusting unwanted, unnecessary, and counterproductive interventions on us.  That’s just my theory, but I’m sticking to it.

Now let’s hit the Total Button on these four strikes.  Let’s zoom out, all wide-angle-like, and look at what a world without autistic people would look like.

It would not be any less violent.  It would not be any less intellectually disabled.  It would not be any less crime-ridden.  And it probably wouldn’t even be any less expensive, once a few misguided policies have been struck and all the remaining numbers have been crunched.

Such a world likely is more extroverted and crowded.  It is (generally) less creative and inventive.  It is likely just as expensive.

I can’t think of a single social or economic issue that would be “solved” by erasing autism or autistic people.  I can’t think of a single struggle or challenge that would evaporate by eliminating us.  I can’t think of a single problem that would actually go away.

I can think of a few new or worsening problems, though.  I can imagine a more monochrome landscape of thought, a more limited vocabulary, a more boring and mundane life.  I can imagine a more crowded world, since more people would be out wandering around, chattering with each other about topics of passing and very little significance.  I can imagine a landscape of superficiality, of short attention spans, a drop in productivity, and a spike in aggression.  I can imagine a staleness that brings progress to a screeching halt.

With hardly any new inventions and a greater propensity toward conflict, a society without autistic people can’t end well.

But I’m certain that it will end.

And it won’t be pretty.

My advice?  Keep us around.  Keep the genetics a mystery.  Mystery can be beautiful.  Some things probably aren’t meant to be known.  We don’t necessarily have to solve all the unknowns.  It’s OK for an “X” to stay in the equation. “X”s need love, too.

Or at the very least, proceed with the project only after developing a strict code of medical bio-ethical standards of conduct, a conversation which should involve at least as many autistic people as neurotypical people.  This is indeed our fate, after all.

And there should also be watchdog groups, to keep the scientists and policy makers in line, to keep the over-zeal at bay, to prevent things from getting too carried away.  These watchdogs should keep close tabs. 

Treat it like trying to identify the genes that make someone black or Latino/Latina.  Nobody would dream of it and if they did, they’d (rightly) walk on eggshells for fear of the political landmine.  Put our research under the same scrutiny and regulate it just as tightly.  Approach it like the hot potato that it should be. 

MIT, you’d better tread just as lightly.

We’re watching.

 

 

 

 

 

 

 

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4 Comments

  1. One really important reason to keep genetic diversity intact is to fight viruses. There are some people who cannot get HIV, for example. If you transfer the bone marrow from someone with the anti-HIV mutation, into someone with AIDS, the AIDS can be cured. It is not yet known what immunities may be lost if autism genes are eliminated.

    Liked by 1 person

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